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 is no longer enrolling new participants.
We would like to extend our warmest thanks to all the participants who have been a part of the RCGR. Currently, RCGR scientists are using the information and samples collected from participants to gain a better understanding of the causes, treatments, and outcomes of rare cancers. To date, the studies listed below have been completed using data and/or samples from RCGR participants.
- Physical and Psychological Health in Patients with Rare Cancers
The physical and mental health of cancer patients has been a concern of clinicians and researchers for many years, but most studies have focused on patients with common types of cancer such as breast, colorectal, lung, and prostate. RCGR Principal Investigator Dr. Dianne Finkelstein led a study to examine quality of life reported by individuals with rare cancers participating in the RCGR. This study found that found that the physical and mental health profiles of rare cancer survivors are similar to what is reported for common cancers. Participants without spousal support (especially those currently receiving treatment for their cancer) reported poorer quality of life. The researchers concluded that health care providers should monitor rare cancer survivors for challenges to the physical as well as psychological aspects of quality of life.
For more information, you can read the published manuscript on PubMed Central.