Covid 19 Research using Clinical Trials (Home Page)
Report for D006453: Hemoglobinopathies NIH
(Synonyms: Hemoglobinopathies)
Developed by Shray Alag
Clinical Trial MeSH HPO Drug Gene SNP Protein Mutation
Correlated Drug Terms (0)
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Correlated HPO Terms (0)
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There is one clinical trial.
Clinical Trials
1 Retrospective and Prospective Database of COVID-19 Prevalence and Clinical Course in Pediatric and Young Adult Hematology/ Oncology/Stem Cell Therapy Patients in the New York Tri-State Area.
New York City (NYC) has become the epicenter of the worldwide pandemic caused by severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). By collecting and summarizing the experience with other major health care providers in the tristate (New York (NY), New Jersey (NJ) and Connecticut (CT)) are, the investigators are uniquely positioned to inform the rest of the country about what to expect and how to manage children and young adults with hematological, oncological or stem cell transplant diagnoses during the pandemic.
NCT04445402 Pediatric Cancer Immune System Disorder COVID-19 Hemoglobinopathies MeSH:Hemoglobinopathies Immune System Diseases
Primary Outcomes
Description: To measure the success of the data registry in how many patients agreed to participate and completed the one year follow up. A confirmed case of COVID-19 is defined as a positive result on a reverse-transcriptase- polymerase-chain-reaction (RT-PCR) assay of a specimen collected on a nasopharyngeal swab, or a serum antibody test. Only laboratory-confirmed cases will be described as positive.
Measure: Number of tristate area pediatric HOT patients tested for COVID-19 that completed 1 year follow-up Time: One yearSecondary Outcomes
Description: To analyze effect of COVID-19 on patients and their families mental health. PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children. Each item on the measure is rated on a 5-point scale (1=never; 2=rarely; 3=sometimes; 4=often; and 5=always) with a range in score from 8 to 40 with higher scores indicating greater severity of depression.
Measure: Change in PROMIS T-score Time: Baseline, 3 Months, 6 MonthsDescription: To examine if the pandemic has effects on the patients' nutrition and microbiome. Each patient is given an opportunity to provide stool samples in addition to survey response.
Measure: Number of collected and analyzed stool samples Time: Up to one year