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Boston, Massachusetts – Massachusetts General Hospital (MGH) is pleased to announce that Dianne M. Finkelstein, PhD, Director of MGH Biostatistics Unit, has been awarded a 5-year, $2.5 million grant from the National Cancer Institute (NCI) of the National Institutes of Health (NIH) to serve as the principal investigator for the Data Coordinating Center for the Rare Cancer Genetics Registry (RCGR). Rare cancers account for a significant morbidity and mortality in the United States.

Our new website is live!

Welcome to the Rare Cancer Genetics Registry (RCGR). 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 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 is currently recruiting 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)
  • Chordoma
  • Uveal melanoma
  • Merkel cell carcinoma
  • Vulvar cancer
  • Adenoid cystic carinoma

The RCGR is a resource for patients providing a link to current information and research. Please use the PARTICIPANTS link to the left to acces information on the current studies, answers to Frequently Asked Questions, and links to associated websites.

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

  • Centralized DNA bank
  • Ability to re-contact registrants for new studies
  • Database with registrants’ family cancer history, risk factors, and genetic test results
  • Centralized repository of registrants’ pathology records
  • Ability to obtain registrants’ tumor tissue