The mission of the RCGR is to create a registry of participants with rare cancers who are available to participate in research studies, and an accompanying DNA bank for genetics research. The registry data and the accompanying DNA are available for investigators outside the RCGR who are interested in studying various rare cancers.The RCGR is no longer enrolling new participants.

Registrants’ Cancer Types (n=797) 180 160 140 120 100 80 60 40 20 0 6 Adenoid cystic carcinoma 29 Cholangiocarcinoma/bile duct 26 Chronic lymphocytic leukemia 116 Esophagus 9 Fallopian tube 6 Gallbladder 96 Head/neck 101 Kidney 11 Lymphoma-low grade 166 Myeloma 13 Other 30 Pancreas 10 Peritoneum 102 Sarcoma 3 Small bowel 43 Stomach 19 Testis 11 Thymus

FAQ (Frequently Asked Questions)

When and how was the RCGR funded?
The RCGR was funded by an ARRA grant (Challenge Grant) from NCI in October 2009. Funding for the RCGR was extended by an R01 grant from NCI in 2012.
Where were participants recruited from?
RCGR participants were recruited primarily through six clinical research centers: Massachusetts General Hospital, University of Pennsylvania, University of Colorado, Johns Hopkins University, Georgetown University, and Duke University.
How do I know if the RCGR has the population I need for my study?
Please contact the MGH coordinating center via email at or by phone at 617-724-3000.
Does the RCGR give out research grants?
The RCGR does not give our any research funding. Investigators are responsible for applying for and obtaining their own source of funding.
What scientific governing/advisory system is in place for RCGR?
The RCGR is governed by the Executive Committee, consisting of recruiting center investigators and a non-RCGR scientist. The Executive Committee is chaired by the RCGR grant awardee, Dianne Finkelstein, PhD at Massachusetts General Hospital.
What studies have been done using RCGR data and/or samples?
A complete listing of RCGR publications is available on our publications page.

How we can help you

RCGR resources are available for use by funded researchers, subject ot approval by the RCGR executive committee as well as IRB approval and completion of data/material transfer agreements, as appropriate. RCGR resources include the following:

  • detailed clinical data on registrants’ cancer diagnoses, treatments, and outcomes;
  • registrants’ self-reported data on medical and family cancer history, cancer risk factors, and genetic tests;
  • a centralized DNA and tumor tissue repository;
  • in addition, assistance with database development, data management, and statistical support may be available.

Proposing a Study

Investigators are asked to submit a 1 page proposal, which includes study aims, RCGR population, and data fields and biospecimens required, to the MGH Coördinating Center by sending an email to More detailed information will be provided once the proposal has been received.