Data Release Version 2

Overview

In the second data release of the St. Jude Survivorship Portal, the number of survivors included from the Childhood Cancer Survivor Study (CCSS) has increased dramatically from 2,688 survivors to 25,735 survivors. In combination with the survivors included from the St. Jude Lifetime Cohort (SJLIFE, n=5,053), the total number of survivors included on the portal has increased from 7,741 survivors to 28,500 survivors, of which 2,288 survivors are enrolled in both cohorts.

Data freezes

The data freeze used for the SJLIFE cohort was the same as that used for the version 1 release (December 2018). The data freeze used for the CCSS cohort was the December 2023 data freeze.

Inclusion criteria

For the SJLIFE cohort, criteria for including survivors in the portal were the same as those used in the version 1 release. For the CCSS cohort, all participants who have completed a questionnaire were included in the portal.

Phenotypic data

Baseline phenotypic data are now available for all 25,735 CCSS survivors and longitudinal chronic health condition data are now available for 25,730 CCSS survivors. Diagnosis codes and their descriptions are now available for both the SJLIFE and CCSS cohorts. For the SJLIFE cohort, new demographic variables describing the location of survivors, such as Area Deprivation Index, Social Vulnerability Index, and Rural-Urban Commuting Area Code, have been added to the portal. Subsequent neoplasm data retrieved for SJLIFE survivors without a campus visit have also been added to the portal.

Genetic data

All genetic data on the portal are still whole-genome sequencing data. For the SJLIFE cohort, the amount of genetic data on the portal has remained the same. For the CCSS cohort, the number of survivors with genetic data has increased from 2,688 survivors to 4,803 survivors. These additional survivors are those who are also enrolled in SJLIFE and thus have genetic data available from that cohort.

Data Release Version 1

Overview

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 freezes

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.

Inclusion criteria

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

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

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.