Metadata Catalog
Natural History Data Resource

Working...

Study Detail

Study ID 1007
Name Sickle Cell Clinical Research and Intervention Program
Contact Email jane.hankins@stjude.org
Acronym SCCRIP
Period 2014 -
Design Lifespan cohort study
Study PI Jane S. Hankins
Institution St. Jude Children's Research Hospital
URL https://www.stjude.org/research/clinical-trials/sccrip-hematological-disorder.html
CTGovID NA
Funding Agency St. Jude Children's Research Hospital
Grant Number 1U01HL133996-01
Overview The purpose of this research study is to collect data on sickle cell disease participants from birth to young adulthood. With these data, researchers will better understand problems caused by sickle cell disease both in children and in adults. They will also look at long term effects of current treatments, and use these data as a building block for future research.
Focus Areas 1. To determine the incidence, prevalence, and severity of SCD complications and adverse health conditions within the SCD cohort during five stages of development: the newborn period (birth to 6 months), the infant/pre-school stage (ages 6 months to 6 years), the early school stage (ages 6 to 12 years), the adolescent stage (ages 12 to 18 years), and the years of transition into young adulthood (ages 18 to 25 years).
2. To identify and evaluate risk factors for premature mortality and long-term morbidity in patients with SCD, including those related to disease-modifying therapies, end-organ damage, genetics, neurocognitive deficits, psychosocial factors, and behavioral causes.
3. To investigate the long-term effects of hydroxyurea and other therapies on preservation of organ function, growth and development, and frequency and severity of disease complications, and their long-term medical, neurocognitive, and psychosocial toxicities.
4. To determine the functional aspects of the Transition to Adult Care Program within a clinical research cohort by evaluating disease specific health literacy and readiness in relation to healthcare utilization during adult care.
Outcomes 1. To establish a longitudinal clinical cohort of patients with sickle cell disease (SCD) to serve as a research resource to facilitate evaluation of health outcomes in SCD from pediatric care into adulthood.
2. To facilitate the collection of biological samples from patients with SCD to be used in future studies investigating genetic and epigenetic contributions to disease severity, response to treatment, and morbidity and mortality.
Data Location St. Jude Children's Research Hospital
Biospecimen Available DNA; Plasma; Urine; Cell;
Data Consent Access requests from non-SCCRIP investigators for combined genetic and phenotypic data for hypothesis-driven research may be approved after completion of a concept proposal
Biospecimen Consent Future research with subjects’ biospecimens and the potential risks to loss of privacy
Contact Consent Yes, with permission on consent
Genomic Data No
Age Range 0.5-99
No. Participants 1084
Inclusion Criteria Participant has a diagnosis of Sickle Cell Disease of any genotype
Exclusion Criteria Participant does not have a diagnosis of Sickle Cell Disease of any genotype
Study Documentation
  Select All
Forms
  Select All
   1. SCCRIP-Data-Tables-2017
   2. SCCRIP-CRF-Final-2019

Back to Study List