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GIST SARCOMA LIFE RAFT GROUP CANADA

Patient Registry

Life Raft Group USA Patient Registry

At the GIST Day of Learning 2015, Michelle Durborow (Patient Registry Director, The Life Raft Group USA) gave an excellent presentation in regard to the LRG (USA)’s ongoing work with GIST patients.  Canadians with GIST are invited to join the Life Raft Group (USA), the Patient Registry and the Tissue Bank.

Patient Registry:

  • Largest GIST patient registry in the world: 1600 participants globally
  • Over 14 years of data collection encompassing 35 years of patient history
  • 63 Canadian participants so far
  • Studying the data reveals treatment patterns & outcomes

Benefits of Patient Registry & LRG (USA) Membership

https://liferaftgroup.org/patient-registry/

  • GISTory:  portable medical history; tracks patient history across institutional boundaries
  • Patient Support: email community; virtual tumor board
  • Education: expert patient course; advocacy training; LRG (USA) GIST Days of Learning

GIST Collaborative Tissue Bank

https://liferaftgroup.org/join-our-tissue-bank/

  • One tissue donation can reach the world’s leading GIST research scientist
  • Mutational testing is performed on tissue donations—results are sent to the LRG (USA), the patient, and the patient’s physician