Welcome to the Rare Cancer Genetics Registry (RCGR).

The mission of the RCGR was to create a registry of participants willing to participate in research studies, and an accompanying DNA bank for genetics research. The RCGR, which is funded by the National Institutes of Health, is a resource for recruitment, planning, and coordination of studies on rare cancers. The RCGR recruited participants with these rare cancers:

  • Sarcoma
  • Myeloma
  • Head/neck cancer (diagnosed before age 40)
  • Renal cancer
  • Esophageal cancer
  • Gastric cancer
  • Pancreatic cancer
  • Testicular cancer
  • Fallopian tube cancer
  • Chronic lymphocytic leukemia
  • Lymphoma (low grade)
  • Adenoid cystic carcinoma
  • Biliary tract cancer
  • Thymic cancer

The RCGR is a resource for investigators and provides the following:

  • Centralized DNA and tumor tissue bank
  • Database with registrants’ clinical and self-reported information
    • Clinical data on diagnosis, treatment, and outcomes, extracted from medical records
    • Self-reported family cancer history, risk factors, and genetic test results

The RCGR Principal Investigator is Dr. Dianne M. Finkelstein, Ph.D., at Masschusetts General Hospital / Harvard University.

Contact the RCGR

If you have any questions about the RCGR, you can contact the MGH Coördinating Center by sending email to contact-rcgr@rarecaregistry.org, or by calling 617-724-3000 (please ask for the RCGR).