Liver Glycogen Storage Disease (International)
The International Hepatic Glycogen Storage Disease (IGSD) Priority Setting Partnership (PSP) was set up to find out what the unanswered questions from patients with Liver GSD, families and healthcare professionals are. The IGSD PSP was initiated at the International Glycogen Storage Disease Conference from 15-17th of June 2017, Groningen, The Netherlands.
The PSP wants to enable patients, carers, physicians, nurses and dieticians to work together, across many countries, to find what uncertainties about treatments matter to them, setting a research agenda that strives towards better management and care of patients with Hepatic GSDs.
You can join!
Whatever country you live in, the PSP needs to hear your questions or uncertainties about treatments for Hepatic GSD.
What will the international GSD PSP do with the results?
After gathering your questions about management and care, the PSP will categorise 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.
- The PSP is unique, because of the rarity of hepatic GSD types and the associated international character of the project.
If you are interested in helping the Priority Setting Partnership or want more information:
The first question-gathering survey received 1,388 questions from 763 responders. Work is now going on to ask patients, carers and healthcare professionals to prioritise these.