Cancer Patient and Survivor Cohort Studies

The list below provides links to cancer survivor data resources identified during an EGRP-sponsored workshop held November 3, 2011 that may be of interest to cancer epidemiologists, but is not exhaustive. Access to resources is dependent on procedures outlined for each individual study or resource.

If you have information about a cohort you would like to be considered for inclusion on this list, submit as much information as possible through our patient survivor and/or survivor cohort submission form.

For questions, contact Joanne Watters Elena, Ph.D., M.P.H.

Cohort Cancer Site Number of Patients/Survivors Years of Follow-up Contact
Adult Life after Childhood Cancer in Scandinavia (ALiCCS) Childhood Cancer
(All Sites)
55,000 patients and 275,000 population comparisons Up to 60 years Jeanette Falck Winther, M.D.
Adventist Health Study-2 All Sites 2,000 self-reported; 3,500 incident 5 Gary Fraser. M.D.
After Breast Cancer Pooling Project Breast 18,314 5 to 11 Xiao-Ou Shu, M.D., Ph.D.
Antidepressants and Breast Cancer Pharmacoepidemiology (ABC) Breast 28,000 Up to 13 Reina Haque, Ph.D.
American Cancer Society (ACS) Study of Cancer Survivor-I (SCS-I) Bladder
Breast
Colon & Rectum
Kidney
Lung & Bronchus
Melanomas of the Skin
Non-Hodgkin Lymphoma
Ovary
Prostate
Uterus
4,500 1, 2, and 9 years post diagnosis Kevin Stein, Ph.D.
Cancer Genetics Network All Sites 26,000 12 Dianne Finkelstein, Ph.D.
Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE™) Prostate 14,220 Variable Jenny Broering, R.N., Ph.D. (c), M.P.H.
Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE™) Diet and Lifestyle Sub-Study to CaPSURE™ Prostate 1,800 Variable June Chan, Sc.D.
Cancer Research UK Stratified Medicine Programme: Pilot Study Breast
Colon & Rectum
Lung & Bronchus
Melanoma Ovary
Prostate
9,000 5 stratifiedmedicine@cancer.org.uk
Alice Tuff
Cancer Care Outcomes and Research Surveillance Consortium (CanCORS) Colon & Rectum
Lung & Bronchus
10,000 7 Neeraj Arora, Ph.D.
Jane Weeks, M.D.
CGSU Tissue Acquisition and Biorepository Project Breast
Lung & Bronchus
405 2 Geoffrey Ginsburg, M.D., Ph.D.
Childhood Cancer Survivor Study Kidney
Leukemias
Non Hodgkin Lymphoma Hodgkin
CNS, Neuroblastoma
Soft-Tissue Sarcoma
Bone Sarcoma
37,750 5 to 35 Les Robison, Ph.D.
Greg Armstrong, M.D.
ColoCare Cohort (3 study sites) Colon & Rectum 103 (Heidelberg)
150 (Moffitt)
201 (FHCRC)
Recruitment ongoing at all 3 sites
N/A Heidelberg and FHCRC:
Neli Ulrich, Ph.D.
Moffitt:
Erin Siegel, Ph.D., M.P.H.
Colon Cancer Family Registry Colon 9,583 colorectal cancer patients
(plus 18,275 relatives and 4,244 population-based controls)
Up to 14 View website for contacts.
Commonly Used Medications and Breast Cancer Recurrence Breast 4,400 ~10 Denise Boudreau, Ph.D.
Daughter and MothErS Against Breast Cancer (DAMES) Breast 67 1 Wendy Demark-Wahnefried, Ph.D., R.D.
Diet and Lifestyle Sub-Study of the Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE™) Prostate 2,134 2005 to current
(ongoing)
June Chan, Sc.D.
Genetic Consequences of Cancer Treatment - Danish Part (GCCT) All Sites 31,884 Follow-up of offspring in health registries from birth or start of registry till today Jeanette Falck Winther, M.D.
Genetic Susceptibility of Colorectal Cancer Colon & Rectum 1,553 Up to 8 Xifeng Wu, M.D., Ph.D.
Genetic Susceptibility to Ovarian Cancer Ovary 397 10 Jie Lin, Ph.D.
Xifeng Wu, M.D., Ph.D.
Health, Eating, Activity and Lifestyle (HEAL) Study of Breast Cancer Prognosis Breast 1,180 10 Anita Ambs
Health Professionals Follow-Up Study Colon & Rectum
Prostate
~6,000 prostate cancer cases;
~1,200 colorectal cancer cases
>22 years Walter Willett, M.D., Dr.P.H.
Improving the Care and Outcomes of Women Undergoing Breast Surgery Breast 3,083 Up to 5 Liliana E. Pezzin, Ph.D.
Ann Nattinger, M.D.
Iowa Women's Health Study All Sites 11,198 incident cancers since 1986
4,504 alive as of 12/31/2010
23 years Kim Robien, Ph.D.
Leeds Melanoma Cohort and the BioGenoMEL Consortium Melanoma >2,000 N/A Julia Newton-Bishop, M.D.
LIVESTRONG Survey for People Affected by Cancer All Sites >4,800 post-treatment survivors and >9,000 people affected by cancer (including family members, friends, and loved-ones) Survey every 4 years beginning in 2006 Ruth Rechis, Ph.D.
Stephanie Nutt
Lung Cancer Survival Lung & Bronchus >500 0-12 Raphael Bueno, M.D.
Mayo Clinic Ovarian Cancer Study Ovary ~900 11 Ellen Goode, Ph.D.
Myelodysplastic Syndrome/Acute Myeloid Leukemia Follow-Up Study Leukemias 2,200 6 Sara Strom, Ph.D.
Molecular Characteristics of Early Stage Breast Cancer Breast ~2,400 10 to 25 Melissa Bondy, Ph.D.
Molecular Epidemiology of Non-Hodgkin Lymphoma Survival Non-Hodgkin Lymphoma
(including CLL)
>4,500 Median for living patients: 3 yrs
(max.: 9 years)
James R. Cerhan, M.D., Ph.D.
Molecular Predictors of Risk and Clinical Outcomes in Patients with Bladder Cancer Bladder 2,401 Up to 14 Xifeng Wu, M.D., Ph.D.
Multiethnic Cohort Study All Sites 12,000 Up to 15 Laurence Kolonel, M.D., Ph.D.
National Wilms Tumor Late Effects Study Kidney
(Wilms Tumor)
9,236 with 7,681 alive 14.7 Norman Breslow, Ph.D.
Nurses' Health Study I and Nurses' Health Study II Bladder
Breast
Colon & Rectum
Kidney
Leukemias
Liver
Lung & Bronchus
Melanomas of the Skin
Non-Hodgkin Lymphoma
Oral Cavity & Pharynx
Ovary
Pancreas
Prostate
Stomach
Thyroid
Uterus
9,200 invasive breast cancer in NHS and 2,600 in NHS II (as of 2008) Vary and depend upon years of diagnosis Wendy Chen, M.D., M.P.H.
Michelle Holmes, M.D., Dr.P.H.
Environment and Genetics in Lung Cancer Etiology (EAGLE) Lung
Bronchus
2,000 patients
400 survivors
>5 Maria Teresa Landi, M.D., Ph.D.
Population Sciences Biorepository Breast
Colon & Rectum
Liver
Lung & Bronchus
Pancreas
Stomach
734 2 Michael Scheurer, Ph.D.
Promoting Health in Prostate and Breast Cancer Survivors Prostate
Breast
543 2 Wendy Demark-Wahnefried, Ph.D., R.D.
Prostate Cancer Active Surveillance Study (PASS) Prostate ~600 to date, goal is 1000 2007-current Lisa Newcomb, Ph.D.
June Chan, Sc.D.
Prostate Cancer: Effects of Flax Seed Supplementation and Dietary Fat Restriction Prostate 161 1 Wendy Demark-Wahnefried, Ph.D., R.D.
Prostate Cancer Follow-Up Cohort Prostate 1,200 12 Sara Strom, Ph.D.
Prostate Cancer Outcomes Study Prostate 3,500 13 Linda Harlan, Ph.D.
David Penson, M.D., M.P.H.
Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial All Sites 22,300 13 Amanda Black, Ph.D., M.P.H.
Wen-Yi Huang, Ph.D., M.S.P.H.
Rare Cancer Genetics Registry Kidney
Leukemias
Oral Cavity & Pharynx
Pancreas
Stomach
Other Rare Cancers
600 1 Dianne Finkelstein, Ph.D.
Reaching-out to ENhancE Wellness in Cancer Survivors (RENEW) Breast
Colon & Rectum
Prostate
641 7 Wendy Demark-Wahnefried, Ph.D., R.D.
SNPs to Risk of Metastasis (SToRM) Metastatic Breast 1,000 N/A David Cox, M.S., Ph.D.
Southern Community Cancer Survivorship Study Breast 577 N/A Ann Marie Flores
St. Jude Lifetime Cohort Cancers diagnosed under age 21 >4,000 10 to 48 Melissa Hudson, M.D.
James Gurney, Ph.D.
Survivor Training for ENhancinG Total Health (STRENGTH) Breast 90 1 Wendy Demark-Wahnefried, Ph.D., R.D.
Total Cancer Care All Sites >72,000 Up to 5 View website for contacts.External Web Site Policy
University of North Carolina (UNC) Health Registry/Cancer Survivorship Cohort Bladder
Breast
Colon & Rectum
Kidney
Liver
Pancreas
Prostate
Stomach
500 through 9/2011
(target goal: 10,000)
Currently enrolling patients Jeannette Bensen, Ph.D., M.S.
Debra Irwin, Ph.D., M.S.P.H.
Urologic Oncology Database (UODB) - Bladder Cancer Bladder 730 through 10/2011 1997-current Janet Cowan, R.N., Ph.D. (c), M.P.H.
University of California, San Francisco (UCSF) Urologic Oncology Database and Tissue Bank Prostate ~3,000 with tissue and clinical data 2000-current June Chan, Sc.D.
Janet Cowan
Matt Cooperberg, M.D., M.P.H.
VITamins And Lifestyle (VITAL) Cohort Study All Sites 10,000 0 to 10 Emily White, Ph.D.
Women's Environment, Cancer, and Radiation Epidemiology (WECARE) Study Breast 2,100 (another 2,000 being enrolled) 1985 to 2011 Jonine Bernstein, Ph.D.
Women's Healthy Eating and Living (WHEL) Study * Breast 3,088 7.3 Shirley Flatt

* Not available for collaboration.