Patient Registry in Review

Click on image to see Patient Registry in Review 2018

The Life Raft Group has played an instrumental role in bridging the gap between patients with valuable clinical Gastrointestinal Stromal Tumor (GIST) history and researchers who are eager to understand the natural causes of GIST. The mission of the LRG is simple: enhancing survival and quality of life for people living with GIST through patient-powered research, education and empowerment and global advocacy efforts. The Patient Registry is our powerhouse, proving how important it is to store real world data collected from our members and utilizing it for cutting edge research. Created over 19 years ago, the registry data provides demographic information and also treatment lines associated with various mutations within GIST. With more patients joining our registry each year, we are able to obtain more accurate data and augment survival and quality of life for GISTers.

New registry members are able to provide their information more easily than ever, with our GIST/PRIME platform. This platform allows patients to access, review, and add to their medical GIST history in the palm of their hands. Another great feature of GIST/PRIME is that a patient can see how their GIST information compares to almost 2000 other patients in our registry. Of course, this is all de-identified so one patient does not see another patient’s personal information.

In 2018, the number of GIST/PRIME Patient Registry members skyrocketed to 1925 members. Members can share over 400 data fields including: demographics (sex, gender, age, DOB, marital status, country of birth, ethnicity), date of diagnosis, primary tumor size, treatment, response to treatment, evaluation frequency and results (no evidence of disease, shrinkage, stable, progression, etc.). If a patient does not feel comfortable using GIST/PRIME, the LRG also offers email, phone calls, or postal mail as alternate options for medical updates.

The Life Raft Group Patient Registry is diverse, with patients from over 65 countries. This helps to understand GIST from an epidemiological standpoint. One interesting fact about our registry is that it is evenly divided between genders, 50% female and 50% male. The youngest patient was diagnosed at five years old and the oldest at 98 years old.

Of our Patient Registry members, 420 are also members of our GIST Collaborative Tissue Bank. Each one of our 784 paraffin embedded tissue samples are linked to a medical record, so that we have an entire GIST history relating to a specific paraffin block. Patients participating in both the Patient Registry and our Tissue Bank undergo informed consent (Institutional Review Board or IRB), which allows us to use their clinical GIST history and tissue for research purposes, de-identified. A patient’s personal information is never shared.

As we dive into 2019, our top priorities are to cross the 2000-member mark, help patients better understand their GIST and expand our tissue bank. None of the accomplishments of 2018 could have been possible without our ever-supportive Patient Registry members. We thank you!

Your Data Matters!

Join the Patient Registry / Update Your Medical History / Join the Tissue Bank

If you need additional information on any of these options, please contact Denisse Montoya, Director of the LRG Patient Registry, dmontoya@liferaftgroup.org

Sahibjeet Kaur
Author: Sahibjeet Kaur