The Life Raft Group’s Patient Registry gives GIST patients an opportunity to contribute to finding a cure by sharing information on their medical status, treatments and side effects. This information is kept in a comprehensive database that is constantly being updated. The identity of individual patients is protected, while the information gained is used by LRG’s own research team as well as in other research efforts. It also helps the LRG better support individuals with GIST and advocate on their behalf.
For example, the data from this registry helps to identify critical areas not being covered in a timely way by clinical trials or by the traditional cancer research community, including understanding the side effects of cancer drugs and the implications of changes in drug levels after a clinical trial has started.
Signing up is easy, and can be done as part of the application process to join the Life Raft Group. The Life Raft Group application can be found on our website here. The form can also be downloaded and mailed to LRG, or patients can sign up by phone at 973-837-9092. Participation in the Patient Registry is optional as part of the membership process. Individuals can choose to be contacted later about the registry if they are not ready to share their information right away.
As medication dosages change and new scans are done, the information in the registry can be updated by downloading a form on our website here or by calling us.
Once you participate in the Patient Registry, you will receive a consolidated medical GIST history, or GISTory. The electronic medical record system gives you flexibility and direct access to your health information. This can be of great assistance to you as you embark on your GIST journey.
There are nearly 1,500 participants in LRG’s GIST Patient Registry. When combined with LRG’s Collaborative Tissue Bank, it provides researchers with a valuable source of data.
The Patient Registry is on the cutting-edge of medical research. Patient-initiated medical research projects offer a number of appealing scenarios. Patient groups such as LRG can design and conduct their own studies, collect their own data, analyze the results, and publish the research. They can provide researchers with access to perfectly targeted study populations at little or no cost.
