-
Notifications
You must be signed in to change notification settings - Fork 5
St. Jude Survivorship Portal Data Releases
The St. Jude Survivorship Portal can be accessed at survivorship.stjude.cloud and has been described in the following paper. The first data release of the portal consists of data generated by two childhood cancer survivorship cohorts: the St. Jude Lifetime Cohort (SJLIFE) and the Childhood Cancer Survivor Study (CCSS). Both cohorts are retrospective cohorts with prospective follow-up of childhood cancer survivors who have survived at least 5 years following their diagnosis. Survivors in the SJLIFE cohort were diagnosed between 1962 and 2012 and treated at St. Jude Children’s Research Hospital. Survivors in the CCSS cohort were diagnosed between 1970 and 1999 and treated at one of 31 pediatric oncology 473 institutions in the US and Canada.
Data from the SJLIFE cohort was retrieved from the December 2018 data freeze. Data from the CCSS cohort was retrieved from the January 2020 data freeze.
For the SJLIFE cohort, all survivors with whole-genome sequencing (WGS) data were included in the portal. Additionally, survivors without WGS but who visited the St. Jude campus for clinical assessments were also included in the portal. Based on these criteria, 5,053 SJLIFE survivors were included in the portal. For the CCSS cohort, survivors with WGS and who were not SJLIFE survivors were included in the portal. Based on these criteria, 2,688 CCSS survivors were included in the portal. In total, 7,741 survivors were included in the portal.
Phenotypic data hosted on the portal consist of demographic, clinical, and patient-reported data of survivors. All data are baseline data, except for chronic health condition data, which are longitudinal data collected through clinical assessments (SJLIFE) or surveys (CCSS) of survivors.
Genetic data hosted on the portal consist of whole-genome sequencing (WGS) data at >30X coverage performed on germline DNA, which was isolated from blood samples for the SJLIFE cohort and buccal or saliva samples for the CCSS cohort.