Sarcoma Survivorship Registry
OHSU researchers are looking to enroll sarcoma survivors in a registry. To learn more, please email SarcomaSurvivor@ohsu.edu.
Why it’s important
Researchers at the OHSU Knight Cancer Institute are studying sarcoma survivors to better understand how treatment affects patients. Survivors of sarcoma, a cancer of soft tissue or bone, can face complications and unique challenges. Researchers hope to develop better strategies for helping them.
Who can join
To be eligible for the registry:
- You must be over age 15.
- You must have been treated for a sarcoma of any type.
- You must have completed treatment at least two years ago.
- You must have no evidence of sarcoma now.
How the registry works
Participants will make one visit to the Sarcoma Clinic at OHSU’s South Waterfront campus to learn details of the study and to fill out a questionnaire. The questionnaire should take no more than 20 minutes to finish. Participants will not receive any treatment or compensation.
The registry is a program of the SWOG Sarcoma Survivorship Subcommittee, a research group led by Dr. Lara Davis of OHSU and Dr. Larry Baker of the University of Michigan. Group members represent 12 sarcoma centers across the U.S.
Benefits for participants
In addition to helping advance scientific knowledge, participants will receive a Survivor Card that summarizes their sarcoma treatment. They will also get the opportunity to learn about future research on sarcoma survivors.
Cancer registries are databases of cancer diagnosis and individual information are compiled and used in research. They offer concerned individuals the opportunity to participate in research, and investigators opportunities to conduct valuable research.
Personalized Cancer Medicine Registry (PCMR)
The Personalized Cancer Medicine Registry (PCMR) is a registry of patients who have consented to this tumor genotyping, as well as to future contact for health updates and potential study opportunities. The registry will include molecular, clinicopathologic, and staging information, which is stored and can readily be searched as trials of new targeted therapies are opened up. This Registry will allow providers to enroll patients into trials based on a molecular fingerprint of their tumor, which should maximize the likelihood of a good therapeutic response.
The Cancer Registry at OHSU was originally established in the early 1960’s and has been in continuous operation since. The Cancer Registry maintains a wide range of detailed demographic, diagnostic, treatment and outcomes data on all patients with a diagnosis of malignancy, as well as all primary brain/CNS tumors whether benign or malignant. The data is utilized in a variety of ways, such as the evaluation of efficacy of treatment modalities, analyses of patient outcomes and the routine submission of data to the state and national databases. The Cancer Registry is an integral part of the OHSU Cancer Program and is required for Commission on Cancer (CoC) accreditation.