Our Spring to GIST Awareness Day Campaign Continues!
Our spring fundraising campaign is all about Fueling GIST Research and we will be sharing examples of all the ways The Life Raft Group is involved in GIST research and accelerating outcomes that affect patient survival and how our community is helping us move forward & raise funds to do so. We are committed to raising $25K during this campaign. Click on the image above to learn more about how you can get involved with this Campaign.
The LRG’s Data Management & Research team share about curating & maintaining a GIST Patient Registry
Today, we’re sharing a bit about the work of a department that is the heart of data & research at the LRG – the Data Management & Research (DM&R) team (aka Patient Registry). The team was rebranded in 2022 with a title that more effectively encompasses the enormity of the work they perform. Last weekend we engaged our audience with a brief reel about becoming a member of the LRG and it’s benefits. This week we visit Denisse Evans, Senior Director of DM&R, Sahibjeet Parmar, Director, and Antoinette (Toni) Pauwels, Associate for a ‘day in the life’ of the DM&R team & talk about the LRG Patient Registry.
As you read this article and view the video, we hope that you’ll consider fueling GIST research with a donation to help us make our goal of $25K for GIST research this month.
What’s the purpose of a Patient Registry?
Imagine a vast research study where your voice matters the most. The GIST Patient Registry is precisely that – a platform for GIST patients and caregivers worldwide to volunteer their treatment information. Your valuable contributions enable researchers to understand the natural history of GIST, treatment outcomes, and pave the way for real-world evidence data.
The power of your data
Imagine a vast research study where your voice matters the most. The GIST Patient Registry is precisely that – a platform for GIST patients and caregivers worldwide to volunteer their treatment information. Your valuable contributions enable researchers to understand the natural history of GIST, treatment outcomes, and pave the way for real-world evidence data.
Empowering your decisions
Being a part of the GIST Patient Registry means taking control of your journey like never before. With access to your medical records and the ability to update your information easily, you can efficiently communicate with medical professionals and make informed decisions about your treatment options.
Your voice ignites change
Beyond being patient-advocates, you become patient-scientists in the GIST Patient Registry. Your data and experiences are the driving force behind research decisions, influencing the direction of studies and the development of better treatments. Together, we are transforming the landscape of medical research.
Your data is secure
Patient registry data is of utmost importance in healthcare, serving as a valuable resource for medical research, disease management, and improving patient care. To ensure the security of patient registry data, stringent measures are in place. Robust encryption techniques safeguard the data during transmission and storage, preventing unauthorized access. Access controls are implemented, limiting data retrieval and modification to authorized personnel only. Additionally, strict privacy regulations and compliance standards, such as HIPAA in the United States, enforce data protection and govern the collection, use, and sharing of patient information.
If you have questions about the LRG GIST Patient Registry, please contact: patientregistrydepartment@liferaftgroup.org
Read the latest study published by our team:
“Gastrointestinal Stromal Tumor Patients with Molecular Testing Exhibit Superior Survival Compared to Patients without Testing: Results from the Life Raft Group (LRG) Registry”
Donate to our Fueling GIST Research
Fundraising Campaign Today!
