Childhood Cancer Survivor Study

Conditions

Cancer

Keywords

Childhood cancer, Young Children, Adults

Brief summary

The Childhood Cancer Survivor Study (CCSS) will investigate the long-term effects of cancer and its associated therapies. A retrospective cohort study will be conducted through a multi-institutional collaboration, which will involve the identification and active follow-up of a cohort of approximately 50,000 survivors of cancer, diagnosed before 21 years of age, between 1970 and 1999 and 10,000 sibling controls. This project will study children and young adults exposed to specific therapeutic modalities, including radiation, chemotherapy, and/or surgery, who are at increased risk of late-occurring adverse health outcomes. A group of sibling controls will be identified and data collected for comparison purposes.

Detailed description

The study will focus on the following objectives: * Characterize survivors' health with respect to disease- and treatment-related factors. * Investigate the consequences of various intensities of exposure to chemotherapy and/or radiation on health outcomes (e.g., cardiovascular, reproductive, second cancers, etc…). * Compare the mortality experience of survivors with the general population. * Characterize the health-related behaviors, patterns of medical care, and medical follow-up needs of survivors. * Describe patterns of familial aggregation of cancer, including known (and variations of) cancer family syndromes. * Collect and store biologic samples (saliva, blood, second tumor tissue) to correlate with health outcomes and use for future research.

Webster R, Srivastava DK, Xie L, Darji H, Liu W, McGrady ME, Brinkman TM, Alberts NM, Ness KK, Fuemmeler B, Kunin-Batson AS, Huang IC, Armstrong GT, Howell RM, Green DM, Yasui Y, Krull KR.

2025-11-20

10.1016/j.eclinm.2025.103657

Contributions of cancer treatment and genetic predisposition to risk of subsequent neoplasms in long-term survivors of childhood cancer: a report from the St Jude Lifetime Cohort and the Childhood Cancer Survivor Study.

Neupane A, Liu Q, Taneja S, French J, Ehrhardt MJ, Brinkman TM, Webster R, Yang JJ, Im C, Turcotte LM, Neglia JP, Gramatges MM, Howell RM, Bhatia S, Ness KK, Hudson MM, Armstrong GT, Robison LL, Yasui Y, Sapkota Y.

2025-06-013 citations

10.1016/s1470-2045(25)00157-3

Trends in physical functioning in acute lymphoblastic leukemia and non-Hodgkin lymphoma survivors across three decades.

Wilson CL, Bjornard KL, Partin RE, Kadan-Lottick NS, Nathan PC, Oeffinger KC, Hayashi RJ, Hyun G, Armstrong GT, Leisenring WM, Howell RM, Yasui Y, Dixon SB, Ehrhardt MJ, Robison LL, Ness KK.

2023-11-081 citations

10.1007/s11764-023-01483-1

Cancer germline predisposing variants and late mortality from subsequent malignant neoplasms among long-term childhood cancer survivors: a report from the St Jude Lifetime Cohort and the Childhood Cancer Survivor Study.

Chen C, Qin N, Wang M, Dong Q, Tithi SS, Hui Y, Chen W, Wu G, Kennetz D, Edmonson MN, Rusch MC, Thrasher A, Easton J, Mulder HL, Song N, Plonski NM, Shelton K, Im C, Ehrhardt MJ, Nichols KE, Leisenring WM, Stratton KL, Howell R, Yasui Y, Bhatia S, Armstrong GT, Ness KK, Hudson MM, Zhang J, Wang H, Srivastava DK, Robison LL, Wang Z.

2023-10-0114 citations

10.1016/s1470-2045(23)00403-5

Major cardiac events for adult survivors of childhood cancer diagnosed between 1970 and 1999: report from the Childhood Cancer Survivor Study cohort

Daniel A. Mulrooney, Geehong Hyun, Kirsten K. Ness, Matthew J. Ehrhardt, Yutaka Yasui et al. (15 authors)

BMJ2020-01-15157 citations

10.1136/bmj.l6794

Effect of Temporal Changes in Therapeutic Exposure on Self-reported Health Status in Childhood Cancer Survivors.

Ness KK, Hudson MM, Jones KE, Leisenring W, Yasui Y, Chen Y, Stovall M, Gibson TM, Green DM, Neglia JP, Henderson TO, Casillas J, Ford JS, Effinger KE, Krull KR, Armstrong GT, Robison LL, Oeffinger KC, Nathan PC.

2016-11-0835 citations

10.7326/m16-0742

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

RETROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

Yes

Inclusion criteria

Initial Cohort: * Five-year survival following diagnosis of leukemia, lymphoma, CNS tumor, bone tumor, Wilms tumor, neuroblastoma, or soft tissue sarcoma before age 21 years between January 1, 1970 and December 31, 1986 at one of participating centers. Expanded cohort: * Five-year survival following diagnosis of leukemia, lymphoma, CNS tumor, bone tumor, kidney tumor, neuroblastoma, or rhabdomyosarcoma before age 21 years between January 1, 1987 and December 31, 1999 at one of participating centers. * English- or Spanish-speaking and living in the U.S. or Canada at the time of diagnosis.

Exclusion criteria

* Diagnosis of non-malignant tumors (i.e., Langerhans cell histiocytosis, meningioma, craniopharyngioma, etc.) treated with radiation and/or chemotherapy. * Non-English speaking or residence outside the US or Canada. Sibling Controls: * For comparison purposes, a group of sibling controls will be identified to represent a stratified random sample based on the distribution of survivors with regard to cancer diagnosis, age, sex, race, and geographic location.

Design outcomes

Primary

Measure	Time frame
To characterize survivors' health outcomes with respect to disease-, treatment, and genetic-related factors.	25 years

Countries

Canada, United States

Contacts

CONTACTGregory T. Armstrong, MD, MSCE

referralinfo@stjude.org888-226-4343

PRINCIPAL_INVESTIGATORGregory T. Armstrong, MD, MSCE

St. Jude Children's Research Hospital

Outcome results