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Study Detail

Study ID 1015
Name Recipient Epidemiology and Donor Evaluation Study
Contact Email bcuster@vitalant.org
Acronym REDS-BSCDC
Period 2013-2018
Design Prospective Longitudinal Cohort
Study PI Brian Custer
Institution Multiple institutes
URL https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs001468.v2.p1
CTGovID NA
Funding Agency NHLBI-TOPMed
Grant Number HHSN268201100007I
Overview This study is part of the NHLBI Trans-Omics for Precision Medicine (TOPMed) Whole Genome Sequencing Program. The REDS-III Brazil SCD Cohort study focused on transfusion practices and predictors of health outcomes in patients with Sickle Cell Disease (SCD).
Focus Areas 1. Whole Genome Sequencing
2. Transfusion medicine practices
3. Clinical outcomes
4. Genotype-phenotype associations
Outcomes 1. Establish a cohort of SCD patients with a comprehensive centralized electronic database of detailed clinical, laboratory and transfusion information, as well as establish a repository of blood samples to support biological studies relevant to SCD pathogenesis and transfusion complications;
2. Characterize changes in markers of inflammation in response to transfusion by analyzing chemokine/cytokine panels in serial post transfusion specimens;
3. Identify single nucleotide polymorphisms (SNPs) that contribute to the risk of red blood cell alloimmunization in SCD by performing a genome-wide association (GWA) study in transfused SCD patients;
4. Characterize risk of HIV and HIV outcomes in the Brazilian SCD population and compare SCD outcomes among HIV sero-positive and sero-negative SCD patients.
Data Location dbGaP
Biospecimen Available Blood; DNA; Plasma; Serum; Cell;
Data Consent dbGaP
Biospecimen Consent dbGaP
Contact Consent dbGaP
Genomic Data Yes
Age Range 0-99
No. Participants 2795
Inclusion Criteria Eligible participants classified as adult (>=18 years of age) and pediatric patients (<18 years) were identified by randomly selecting patients with a confirmed diagnosis of sickle cell disease and at least one clinical encounter in the last three years at the 6 REDS-III sites. Stratified random sampling was conducted proportional to the age (<18 or >=18), gender and SCD genotype distributions of the patients at each hemocenter to ensure the study population was reflective of the SCD population at each site
Exclusion Criteria SCD Diagnosis
Study Documentation
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TOPMed_dbGaP_Freeze8
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Data ElementVariables
Address
Age
Ethnic Group
Gender gender
Language
National Origin
Nuclear Family
Race
Data ElementVariables
Abdomen
Anthropometrics HeightInEnrollment
WeightInEnrollment
Cardiovascular
Extremities
General
Liver
Reproductive
Respiratory
Spleen
Vital signs DiastolicBP
OxygenSaturation
SystolicBP
Data ElementVariables
Antibiotics
Asthma
Blood Medication History
Cardiovascular
Compliance
Current Medication
Depression Medication History
Hydroxyurea HydroxyureaUse
Medication
Neurologic Medication History
Pain
SCD Medication
Sildenafil
Supplements
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