Sarcoma Patient Registry Programs

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A common feeling that many people diagnosed with sarcoma have is the feeling of helplessness. They are generally at the mercy of a treatment schedule and it’s a waiting game to see if those treatments are working. Or, if they are in remission, there is the constant worry of the disease returning. However, one of the ways a patient can fight back and gain a bit of control over the disease is use their experience to help find a cure.

Sarcoma patients can join patient registry programs that use their data or sometimes a saliva sample to use toward research efforts.

Some common programs for sarcoma patients to join include:

The Sarcoma Foundation of America’s (SFA) Patient Registry Program: This program takes a record of important aspects of the course of treatments that a sarcoma patient has undergone and that patient’s health history. It uses that information as a tool to assist researchers and oncologists as they work to find a cure for sarcoma.

23andMe: The 23andMe Sarcoma Research program uses just a small saliva sample for a genetic analysis and asks participants to fill out online surveys about their treatments and experience with sarcoma.  By joining the 23andMe community, a patient is not only helping to find a cure for sarcoma, they are also making connections with others who have been diagnosed with sarcoma. 23andMe shares sarcoma news and available treatment information with members.

CenterWatch: This group is not exactly a patient registry program, but they do provide access to a full list of clinical trials.

For more information on resources for people who have been diagnosed with sarcoma, please visit the sarcoma resources section of our website.

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