Founding Members of the International Paediatric and SDH-Deficient GIST Consortium – September 2018


GIST Support UK and our specialist clinic team PAWS-GIST at the  Addenbrooke’s Cambridge University Hospital NHS Foundation Trust have  joined forces with Liferaft Group of America and world specialists as  founding members of the International Paediatric and SDH-Deficient GIST  Consortium.

This collaboration, the first of its kind by a European clinic, is so significant the news was announced by the former Vice President of the  United States, Joe Biden, at a dedicated cancer summit in Washington DC held on Friday 21st September.

Paediatric, adolescent, wild type, syndromic, gastrointestinal stromal  tumours (PAWS-GIST) generally affect children and young adults, and  represent only a small percentage of GIST patients. Treatments that are  available for GIST are often less effective for PAWS-GIST patients.

The UK members of the consortium include: Dr Ramesh Bulusu, PAWS-GIST  Clinic lead and consultant oncologist, Dr Ruth Casey, consultant  endocrinologist, Dr Olivier Giger, consultant pathologist and GIST  Support UK/PAWS-GIST trustees, Jayne Bressington and Victoria Bassett.

The consortium’s aim is to focus the best research brains in the world  to find within three years at least one effective treatment for the rare  children’s cancer subset.

The starting point will be to create a dedicated data sharing platform,  a tissue bank in America to compliment the existing GIST Support UK  National tissue bank in the UK, establish guidelines for clinical  stakeholders, expand clinical trials, and speed up results. Strategies  include educational programmes for healthcare professionals and patients  and families worldwide.

Partners include: Boston Children’s Hospital; Cambridge University  Hospitals NHS Foundation Trust UK; Children’s Hospital Los Angeles;  Dana-Farber Cancer Institute; Fox Chase Cancer Centre; Foundation  Medicine; GIST Support International; GIST Support UK & PAWS-GIST;  Huntsman Cancer Institute; Massey Cancer Centre; Memorial Sloan  Kettering Cancer Centre; Moores Cancer Centre UCSD; National Cancer  Institute; National Institutes of Health; Oregon Health and Science  University; SDH-RA Cancer Research Advocates; St. Jude Children’s  Research Hospital; Sylvester Comprehensive Cancer Centre; Technion –  Israel Institute of Technology; The Life Raft Group; and University of  Bologna, Italy.

Dr Bulusu, who has been the consultant clinical lead for PAWS-GIST since  its inception in 2014 said:

“This is an extremely exciting moment for us  and has the potential to improve understanding, research and outcomes  for those who have PAWS-GIST. When we launched the clinic one of our  most ambitious goals was to improve outcomes for these young patients  and hopefully, find a cure. By collaborating with specialists in Europe,  America and elsewhere we are jointly increasing our chances of doing  that.”

Norman J. Scherzer, Executive Director of the Life Raft Group said:

“We  have more than doubled progress for patients living with GIST with a  major exception – paediatric and SDH-Deficient GIST. That is our  unfinished business: Nobody wants to lose any more children.”

More information on PAWS-GIST clinic can be found on our website at

Posted in GIST News.