Patient Registry

It’s Time to Tell The Stories: Our Good News – Research -Patient Registry

Our Good News Holiday Campaign is the culmination of our year of "Time to Tell the Stories 2022." In this series, we celebrate the connections, the celebrations, the events and milestones that we’ve been privileged to be a part of this year. The LRG GIST Patient Registry is today's focus.

By |2022-12-14T10:28:03-05:00December 14th, 2022|Fundraising, News, Patient Registry, Research|

The Life Raft Group Patient Registry in Review 2021

The LRG plays an instrumental role in bridging the gap between patients with valuable clinical GISTories and researchers who are eager to understand the natural causes of GIST. To illustrate the progress of our data collection in the LRG GIST Patient Registry, we have released the GIST Patient Registry In Review for 2021.

By |2022-06-09T09:02:08-04:00June 9th, 2022|News, Patient Data, Patient Registry|

Quality of Life Questions

The Life Raft Group is committed to ensuring your GIST journey is as comfortable as possible. We have added new fields to our forms to assess your Quality of Life (QOL) over time. These questions [...]

By |2021-11-02T14:19:00-04:00November 20th, 2020|Patient Registry|

Salud con Datos Produces Unique Analysis of Chilean & Mexican Patient Registries

This study is the result of a collaborative effort between Chile and Mexico, called Salud con Datos that sought to determine GIST prevalence, patients’ clinical characteristics and survival rates. Our report is the largest of its kind in Latin America.

By |2020-05-07T11:33:29-04:00May 7th, 2020|Global, News, Patient Registry|

NCI Mentions LRG as Component in Development of Ayvakit

In a new article from the NCI concerning the January 2020 approval of Ayvakit, (produced by Blueprint Medicines) the Life Raft Group is acknowledged in the section, “Capturing the Patient Experience.” We are proud to have played a role in supporting the research involved in bringing a new treatment to market for GIST patients.

By |2020-02-07T14:23:48-05:00February 7th, 2020|D842V, Drug Treatment, News, Patient Registry|

Are YOU Seeing a GIST Specialist?

When diagnosed with any disease, it's important to see a specialist who will have the proper experience to guide you to an effective treatment protocol. This LRG survey queried LRG members about physicians, the physician's ability to answer their questions, and who recommended their GIST specialist in order to get a snapshot of patients' satisfaction with their with their care.

By |2019-12-18T14:50:30-05:00December 18th, 2019|News, Newsletter, Patient Registry|

Increasing Survival without Borders

The Life Raft Group is pleased to announce the official establishment of our Regional Patient Registry, a partnership with Latin America, which will collect medical history and treatment information from more than 600 GIST patients who are represented by Fundación GIST Mexico, Fundación GIST Chile, and Pontificia Universidad Católica de Chile.

By |2019-12-18T14:34:24-05:00December 18th, 2019|Global, News, Newsletter, Patient Registry|

The Life Raft Group Patient Registry in Review 2018

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) [...]

By |2019-03-25T10:37:22-04:00March 22nd, 2019|News, Patient Registry, Research|
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