The International Liver Glycogen Storage Disease Priority Setting Partnership 

The International Liver Glycogen Storage Disease Priority Setting Partnership (IGSD PSP) is set up to find out what the unanswered questions from patients with Liver GSD, families and healthcare professionals are. We ask all participants to give us three questions that they would like to see answered for management and care for patients with Liver GSD. The IGSD PSP was initiated at the International Glycogen Storage Disease Conference from 15-17th of June 2017, Groningen, The Netherlands (igsd2017.com)

The IGSD PSP is an initiative from Terry Derks, MD, PhD, a consultant in paediatric metabolic medicine.  Liver GSD is a rare metabolic disease for which international collaboration is necessary to achieve more knowledge for treating these patients.  15-17 June 2017, the 4th International Conference on Glycogen Storage Diseases will be held in Groningen.  This is an opportunity to give a platform to physicians, dieticians and patients to come together and discuss management and care of Liver GSD.

We want to enable patients, carers, physicians, nurses and dieticians to work together to find what questions about management and care for patients with Liver GSD matter to all. Together, we will set a research agenda to strive towards better management and care of patients with Liver GSD.

The James Lind Alliance (JLA) is a UK-based non-profit making initiative, established in 2004.  It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs).  These partnerships identify and prioritise uncertainties, or ‘unanswered questions’, about the effects of care and management that they agree are the most important.  The aim of this is to help ensure that those who fund health research are aware of what really matters to both patients and clinicians.  The UK’s National Institute for Health Research (NIHR – www.nihr.ac.uk) funds the infrastructure of the JLA to oversee the processes for priority setting partnerships, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.

You can join!

Do you want to stay involved in prioritizing the questions asked by patients, carers and healthcare professionals? Send an email to igsdpsp@gmail.com

What will the international GSD PSP do with the results?

Now that we have gathered your questions, we will categorize them and establish which ones are unanswered. These questions will be sent back to the participants in order to determine the top priorities. The end result will be a top 10 list of questions for research that patients, carers, physicians, nurses and dieticians want answered.

Why this matters

  • No one understands Liver Glycogen Storage Diseases better than those who live it or care for those who do. This will allow researchers to find what is most important for patients.
  • Setting priorities internationally will encourage investments in research.
  • It will direct research and funding to the most relevant research priorities.
  • It makes sure that researchers across the globe know what knowledge is certain and which is not.
  • Our PSP is unique, because of the rarity of hepatic GSD types and the associated international character of the project.

In the following file you can find more information on the Protocol for the IGSD PSP! IGSD PSP Protocol

If you are interested in helping our Priority Setting Partnership, see or website or one of the following links:

JLA Website
Facebook
Twitter