Covid 19 Research using Clinical Trials (Home Page)
ASSISTWiki
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Clinical Trial MeSH HPO Drug Gene SNP Protein Mutation
Correlated Drug Terms (1)
| Name (Synonyms) | Correlation | |
|---|---|---|
| drug556 | Chest physiotherapy using a non-invasive oscillating device Wiki | 1.00 |
Correlated MeSH Terms (2)
| Name (Synonyms) | Correlation | |
|---|---|---|
| D001321 | Autistic Disorder NIH | 0.50 |
| D000067877 | Autism Spectrum Disorder NIH | 0.41 |
Correlated HPO Terms (2)
| Name (Synonyms) | Correlation | |
|---|---|---|
| HP:0000717 | Autism HPO | 0.50 |
| HP:0000729 | Autistic behavior HPO | 0.41 |
There is one clinical trial.
Clinical Trials
1 Project ASSIST: Advocating for Supports to Improve Service Transitions
This is a randomized intervention study to test and develop the national curriculum of a parent intervention training targeting parent's ability for advocate for services to improve the transition to adulthood for their youth with autism spectrum disorder (ASD). UPDATE regarding COVID-19: The current intervention has been paused until it is safe to meet as a group again. We are still recruiting participants for cohort 2 (in TN and IL) and Cohort 1 and 2 (in WI), as the plan is to resume the intervention as soon as the situation allows and to keep the future scheduled interventions happening in the Fall of 2020, Fall of 2021 and Winter of 2022. For the baseline data collection visit, we have moved to remote data collection for all measures except the psychological testing with the youth - meaning that families will be able to partially complete baseline data via teleconference and/or phone calls and online surveys. In-person visits to complete the psychological testing with the youth will be scheduled in the future when it is safe to meet face to face.
NCT04173663 Autism Spectrum Disorder Autism Behavioral: ASSIST MeSH:Autistic Disorder Autism Spectrum Disorder
HPO:Autism Autistic behavior
Primary Outcomes
Description: Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire created by the researchers (based on a measure developed to evaluate the VAP-T, Burke, Goldman, Hart, & Hodapp, 2016) will be used to measure parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Measure: Change in Parental Knowledge about adult services questionnaire Time: Baseline to initial follow-up (3 months after the intervention starts)
Description: Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Measure: Change in Parental Empowerment Scale Time: Baseline to initial follow-up (3 months after the intervention starts)
Description: Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC; Burke, Goldman, Hart, & Hodapp, 2016). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Measure: Change in Advocacy Skills and Comfort Scale Time: Baseline to initial follow-up (3 months after the intervention starts)
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 12-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 12-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 12-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation (Taylor, Adams, & Bishop, 2016) will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Measure: Social Participation Youth Outcomes Time: 12-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 12 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 12-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parent advocacy activities, measured using the Advocacy Activities measure (Taylor, Hodapp, Burke, Waitz-Kudla, & Rabideau, 2017).The 16-item instrument measures how frequently parents spend time in advocacy activities for the son/daughter with ASD. The response options range from 1 = not at all to 4 = very often. The total score can range from 16 to 64, with higher scores indicating greater parent participation in advocacy activities.
Measure: Change in Advocacy Activities Scale Time: Baseline to 12-month post-intervention
Secondary Outcomes
Description: Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire created by the researchers (based on a measure developed to evaluate the VAP-T, Burke, Goldman, Hart, & Hodapp, 2016) will be used to measure parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Measure: Change in Parental Knowledge about adult services questionnaire Time: Baseline to 12-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire created by the researchers (based on a measure developed to evaluate the VAP-T, Burke, Goldman, Hart, & Hodapp, 2016) will be used to measure parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Measure: Change in Parental Knowledge about adult services questionnaire Time: Baseline to 18-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Measure: Change in Parental Empowerment Scale Time: Baseline to 12-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Measure: Change in Parental Empowerment Scale Time: Baseline to 18-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC; Burke, Goldman, Hart, & Hodapp, 2016). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Measure: Change in Advocacy Skills and Comfort Scale Time: Baseline to 12-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC; Burke, Goldman, Hart, & Hodapp, 2016). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Measure: Change in Advocacy Skills and Comfort Scale Time: Baseline to 18-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 6-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 24-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 30-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 6-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 24-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 30-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 6-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 24-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 30-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation (Taylor, Adams, & Bishop, 2016) will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Measure: Social Participation Youth Outcomes Time: Baseline
Description: Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation (Taylor, Adams, & Bishop, 2016) will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Measure: Social Participation Youth Outcomes Time: 30-month post-intervention
Description: The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: Baseline
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 6 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 6-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 24 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 24-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 30 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 30-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: Baseline
Description: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: 6-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: 24-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: 30-month post-intervention
Description: The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before ASSIST. The investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: Baseline
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 6-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 12-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 24-month post-intervention
Description: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 30-month post-intervention
Description: Examine whether ASSIST participation increases the intervention target of parent advocacy activities, measured using the Advocacy Activities measure (Taylor, Hodapp, Burke, Waitz-Kudla, & Rabideau, 2017).The 16-item instrument measures how frequently parents spend time in advocacy activities for the son/daughter with ASD. The response options range from 1 = not at all to 4 = very often. The total score can range from 16 to 64, with higher scores indicating greater parent participation in advocacy activities.
Measure: Change in Advocacy Activities Scale Time: Baseline to 30-month post-intervention
Related HPO nodes (Using clinical trials)
HP:0000717: Autism
Genes 196
NLGN4X DNM1 SHANK3 PIK3CA DHCR7 LIMK1 SOX3 GJA5 PTCHD1 TSC2 SCN3A STS KCNAB2 SLC13A5 SCN8A ACTL6B NLGN4X ELN CNKSR2 SLC1A2 PWAR1 LHX1 PIGL ATP6V1A NLGN3 ATRX ADSL MED13L NIPBL PRDM16 TSC1 DPYD SCN8A FTSJ1 TBX1 DYM SYNJ1 TBCK DYRK1A WWOX CHRNA7 TRAK1 AUTS2 RREB1 SEMA3E TSC2 NTRK2 HNF1B NPAP1 CHD7 NAGA TCF12 SMC3 CACNA1C GABRA2 RERE YY1 PRKAR1A NRXN1 CACNA1B CHD8 WFS1 RAD21 MECP2 ARVCF FLCN NDN STS SKI SDHC TBR1 BAZ1B PROKR2 CYFIP2 UBE3A NDP SOX2 IL1RAPL1 HERC2 AP3B2 EEF1A2 MAGEL2 GP1BB KCNB1 REV3L SMC1A NONO GTF2IRD1 UFD1 STXBP1 SNORD115-1 NUS1 MED12 CACNA1A MKRN3-AS1 GAMT SH2B1 RFC2 GABRG2 KLLN GRIN2D PLXND1 SLC9A6 GTF2I IFNG MEIS2 EXT2 EP300 CLTC ALDH5A1 ANKRD11 DHCR7 SIN3A SNRPN FGFR1 CLIP2 GRIA3 COMT NECAP1 NAGA HESX1 ZBTB20 FMR1 SZT2 OPHN1 NHS JMJD1C EHMT1 AARS1 FMR1 UBA5 TMLHE ARV1 NLGN3 MED13L DMPK HIRA YWHAG CREBBP MKRN3 SEC23B TBX1 PARS2 SIM1 SETD5 EHMT1 AKT1 ARNT2 KCNA2 ALMS1 SNORD116-1 PPP3CA GABRB2 PDE4D CNTNAP2 TSC1 KDM5C TBL2 OTX2 SDHB GJA8 SNRPN TBX1 GABRD DEAF1 PWRN1 KMT2A USF3 PTEN SATB2 FGF12 RPL10 IQSEC2 DHDDS PDE4D AHDC1 BCKDK SLC35C1 HDAC4 SEC24C GABRA5 PAH MAOA IPW SMAD4 MAN1B1 RAI1 KCNA2 HCN1 NFIB PTEN GATM SYNGAP1 HDAC8 ALG13 SDHD Protein Mutations 1
S1009A SNP 1
rs6971 HP:0000729: Autistic behavior
Genes 557
SNX14 PPM1D NLGN4X PIGY CAMTA1 TMEM231 SLC6A8 LIMK1 SOX3 CHD2 GJA5 CLCN4 MICOS13 LMAN2L TSC2 STS KCNAB2 SLC13A5 ARID1B SCN8A ND2 NLGN4X TCF4 NUS1 CLP1 ELN CNKSR2 SCN1A DEPDC5 SLC1A2 PWAR1 NLGN3 GABRG2 ATRX ADSL MED13L UCHL1 CHD2 TMEM138 GNAQ ADGRV1 RAB39B TSC1 DPYD ALDH18A1 SCN8A ARHGEF6 TBX1 SYNJ1 CDKL5 DYRK1A WWOX CHRNA7 TRAK1 SH2B1 NDUFS3 NDUFV2 IREB2 WDR26 EP300 ARX SPECC1L IL1RAPL1 DLG4 SHANK3 CACNA1C GABRA2 NDUFB11 EGF SLC25A22 ZC3H14 CLIP1 MTOR USP7 PIGQ GATAD2B BCOR CTCF MECP2 CUX2 TIMMDC1 MAPT NDUFAF8 NDUFB10 CACNA1B ANK3 C12ORF4 AFF2 NTNG2 RAD21 MCTP2 DDX3X NALCN ARVCF FBXO31 FLCN VPS13C RPS6KA3 MBOAT7 MED25 MID2 GABRG2 RERE KDM6B NDN TBR1 STS CUX2 NDUFS6 FOXRED1 MBOAT7 TRAPPC9 SKI SDHC HNRNPH2 TBR1 MED13 TAF1 NDUFAF4 WFS1 MED23 EXT2 TSPAN7 TBX2 IL1RAPL1 JAM2 TMEM216 SRP54 NEXMIF SCN1B ASXL3 EEF1A2 MAGEL2 KCNB1 SMC1A GTF2IRD1 UFD1 STAG1 NDUFS8 NDUFAF3 SNORD115-1 PIGV TMEM126B MED12 TBC1D23 CACNA1A GAMT SH2B1 RARS1 RFC2 DMXL2 GABRG2 SLC9A6 NTRK2 PPP2R5D GRN CC2D2A MEIS2 NDUFAF3 FOXP1 EP300 CLTC IQSEC2 ALG13 FRMPD4 ANKRD11 EXTL3 SIN3A SNRPN CACNA2D2 FGFR1 CLIP2 GRIA3 COMT NECAP1 HESX1 HCN1 SZT2 OPHN1 PIGP NHS JMJD1C TCF20 GRIA3 AARS1 FRRS1L UBA5 NDUFS2 TMLHE NDUFV1 PRSS12 PCGF2 NLGN3 KDM5B MED13L DMPK AUTS2 HIRA CDKL5 AP3B2 IQSEC2 CARS2 SYT1 YWHAG PGAP1 SRY STAG2 NAA10 CREBBP OTUD6B CHD2 TRRAP GNAO1 MAN1B1 RAB11B TM4SF20 PRODH UGP2 SEC23B RSRC1 ASH1L PARS2 ZNF41 ST3GAL3 IQSEC1 CXORF56 RERE EHMT1 AKT1 PCDH19 CNNM2 KCNA2 GABRD ZNF711 ALMS1 SYNGAP1 DEAF1 NDUFAF2 SYP SCN9A POMT1 GJA8 GDI1 KCNA1 SETD5 SLC9A7 PCDH19 CDKL5 TBX1 HECW2 TUSC3 NDUFB3 POLA1 PWRN1 USP7 KMT2A AIMP1 AP1S2 PTEN SATB2 ST3GAL3 FGF12 RPL10 IQSEC2 DHDDS GPHN CLCN4 PDE4D AHDC1 EDC3 BCKDK SCN2A SLC35C1 HDAC4 CRBN SEC24C TCF4 NEUROD2 PAH HIVEP2 MECP2 IPW ARFGEF2 KCNA2 HCN1 SLC25A12 GATM NR2F1 SCN2A SON SYNGAP1 MED12 HDAC8 PGAP2 NDUFS7 SCN1B MEIS2 SDHD C9ORF72 DNM1 RSPRY1 SHANK3 PIK3CA DHCR7 NDUFAF5 PTCHD1 TMEM237 SCN3A STXBP1 CHD1 CRADD SIM1 ACTL6B FTSJ1 MAPK8IP3 CDH15 ALG11 KMT5B POLA1 UPF3B LINS1 SMG9 ND3 HERC1 GRIN1 LHX1 PIGL ATP6V1A SETD2 SYNJ1 NIPBL TUBB3 HCFC1 KCNT1 PRDM16 VAMP2 MEF2C NEUROD2 ATP1A3 FTSJ1 DYM SNCA TBCK MEF2C SCN9A CXORF56 AUTS2 INTS1 RREB1 SLC45A1 SEMA3E ADNP TSC2 NTRK2 HNF1B PODXL NPAP1 CHD7 SNX14 SCN2A NAGA RSPRY1 BCORL1 TCF12 SMC3 SLC25A1 ACOX1 AGTPBP1 NDUFS1 PIGP GABRA1 CASK CTNNB1 LRRK2 RERE YY1 PRKAR1A DCPS NRXN1 TAF1 CHD8 PSMD12 WFS1 ACADL PIGC MECP2 CNKSR2 AP2M1 SARS1 NAA10 PARK7 CC2D1A HTRA2 BAZ1B PROKR2 KMT2C ND1 CYFIP2 NDUFS4 UBE3A TREM2 NDP TRIM8 SOX2 MECP2 C12ORF4 FOXP2 HERC2 TLK2 AP3B2 GP1BB ARX REV3L UBTF NONO EZR STXBP1 VCP ZNF423 NDUFAF4 NUS1 ADNP MKRN3-AS1 MSTO1 PTCHD1 ACSL4 NSUN2 TNIK PINK1 TET3 SLC6A8 KLLN GRIN2D DNM1 PLXND1 CLCN4 CDK8 ZIC1 GRIK2 GTF2I IFNG EXT2 SLC6A1 USP27X FMN2 ALDH5A1 DHCR7 THOC2 PDE4D RORA POGZ NAGA COG5 ZBTB20 FMR1 NDUFA6 SH2B1 EHMT1 PIGO FMR1 RPS23 HCN1 ARV1 ALG13 AGTR2 PIGL PACS2 PUF60 SLC35A3 NDUFS4 FOXG1 HERC2 PAK3 SQSTM1 TWNK CEP290 STXBP1 MKRN3 NDUFA1 TBX1 TBC1D24 NDUFA11 SYN1 CNTNAP2 PRKN SIM1 SETD5 OTUD6B NEXMIF FRMPD4 PACS1 DPYD ARNT2 PNKP B3GALNT2 NDST1 SNORD116-1 DOCK7 NDUFAF1 PPP3CA DLG3 GFM1 GABRB2 PPP2CA PDE4D CNTNAP2 HNMT TSC1 TRIO KDM5C SIK1 METTL23 WASHC4 STX1B TBL2 OTX2 RNF135 SDHB CTCF ZFPM2 PIGW DMD TMEM106B SNRPN SLC35A3 GABRD DEAF1 PSEN1 GABRB3 USF3 SCN1A NDUFB9 NDUFA13 GABRA5 CHMP2B MAOA NAA15 TECR SCN1A SMAD4 MAN1B1 MAPK10 UBA5 USP9X RAI1 NFIB PTEN KPTN PGAP3 PIGG SCN1B SPATA5 ALG13 PUF60 ZNF81 DNAJC6 NUBPL Protein Mutations 1
S1009A SNP 1
rs6971
Primary Outcomes
Description: Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire created by the researchers (based on a measure developed to evaluate the VAP-T, Burke, Goldman, Hart, & Hodapp, 2016) will be used to measure parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Measure: Change in Parental Knowledge about adult services questionnaire Time: Baseline to initial follow-up (3 months after the intervention starts)Description: Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Measure: Change in Parental Empowerment Scale Time: Baseline to initial follow-up (3 months after the intervention starts)Description: Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC; Burke, Goldman, Hart, & Hodapp, 2016). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Measure: Change in Advocacy Skills and Comfort Scale Time: Baseline to initial follow-up (3 months after the intervention starts)Description: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 12-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 12-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 12-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation (Taylor, Adams, & Bishop, 2016) will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Measure: Social Participation Youth Outcomes Time: 12-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 12 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 12-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parent advocacy activities, measured using the Advocacy Activities measure (Taylor, Hodapp, Burke, Waitz-Kudla, & Rabideau, 2017).The 16-item instrument measures how frequently parents spend time in advocacy activities for the son/daughter with ASD. The response options range from 1 = not at all to 4 = very often. The total score can range from 16 to 64, with higher scores indicating greater parent participation in advocacy activities.
Measure: Change in Advocacy Activities Scale Time: Baseline to 12-month post-interventionSecondary Outcomes
Description: Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire created by the researchers (based on a measure developed to evaluate the VAP-T, Burke, Goldman, Hart, & Hodapp, 2016) will be used to measure parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Measure: Change in Parental Knowledge about adult services questionnaire Time: Baseline to 12-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire created by the researchers (based on a measure developed to evaluate the VAP-T, Burke, Goldman, Hart, & Hodapp, 2016) will be used to measure parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Measure: Change in Parental Knowledge about adult services questionnaire Time: Baseline to 18-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Measure: Change in Parental Empowerment Scale Time: Baseline to 12-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES; Koren, DeChillo, & Friesen, 1992). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Measure: Change in Parental Empowerment Scale Time: Baseline to 18-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC; Burke, Goldman, Hart, & Hodapp, 2016). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Measure: Change in Advocacy Skills and Comfort Scale Time: Baseline to 12-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC; Burke, Goldman, Hart, & Hodapp, 2016). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Measure: Change in Advocacy Skills and Comfort Scale Time: Baseline to 18-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 6-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 24-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Measure: Change in Access to Services interview: Number of services the family applied for Time: Baseline to 30-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 6-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 24-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Measure: Change in Access to Services interview: Number of services the family is receiving Time: Baseline to 30-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 6-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 24-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2; Sanford et al., 2011), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Measure: Change in Access to Services interview: Barriers to services Time: Baseline to 30-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation (Taylor, Adams, & Bishop, 2016) will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Measure: Social Participation Youth Outcomes Time: BaselineDescription: Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation (Taylor, Adams, & Bishop, 2016) will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Measure: Social Participation Youth Outcomes Time: 30-month post-interventionDescription: The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: BaselineDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 6 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 6-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 24 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 24-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 30 months after the intervention. The Vocational Index will be administered via structured interview.
Measure: Post-Secondary Youth Outcomes Time: 30-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: BaselineDescription: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: 6-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: 24-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in employment stability for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment that youth with ASD had before the intervention. The investigators will collect total number of jobs/positions that youth had. The Vocational Index will be administered via structured interview
Measure: Post-Secondary Youth Outcomes: Employment stability Time: 30-month post-interventionDescription: The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before ASSIST. The investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: BaselineDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 6-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 12-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 24-month post-interventionDescription: Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index (Taylor & Seltzer, 2012) will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended before and after ASSIST. Additionally, the investigators will collect total number of hours per week spent in these activities.
Measure: Post-Secondary Youth Outcomes: Hours spent in activity Time: 30-month post-interventionDescription: Examine whether ASSIST participation increases the intervention target of parent advocacy activities, measured using the Advocacy Activities measure (Taylor, Hodapp, Burke, Waitz-Kudla, & Rabideau, 2017).The 16-item instrument measures how frequently parents spend time in advocacy activities for the son/daughter with ASD. The response options range from 1 = not at all to 4 = very often. The total score can range from 16 to 64, with higher scores indicating greater parent participation in advocacy activities.
Measure: Change in Advocacy Activities Scale Time: Baseline to 30-month post-intervention