Dear all,

We would like to welcome you to the website for the International Liver Glycogen Storage Disease (IGSD) Priority Setting Partnership.
The International Liver Glycogen Storage Disease (IGSD) Priority Setting Partnership (PSP) is set up to find out what the unanswered questions from patients with Liver GSD, families and healthcare professionals

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 first survey to collect questions from patients, carers and healthcare professionals has been closed. We want to thank all responders for their efforts. We have received 1388 questions from 763 responders representing 58 countries. These questions will be processed and formulated into researchable questions during the national patient day of the Scandinavian Association for liver Glycogen Storage Diseases in 28-29th of April 2018. Afterwards, we will send a second survey to all participants who have indicated that they want to stay involved in the process to prioritize these questions. In a final workshop in 2019 these prioritized questions will be formulated into a Top-10 for liver Glycogen Storage Diseases.

If you want to stay involved in the process and have not yet indicated this? Please send an email to igsdpsp@gmail.com

On this site, you will find all the information regarding the IGSD PSP, the James Lind Alliance and the Steering Group and Wider Partners.
Want to contact us directly? Go to the contact page.

We would like to offer our sincerest gratitude for your interest and hope that you will participate!

Kind regards,

Also on behalve of the Steering Group,

Terry G. J. Derks, MD, PhD

Priority Setting Partnership Lead
Pediatrician consultant metabolic medicine
Beatrix Children’s Hospital, Section of Metabolic Diseases
University of Groningen, UMC Groningen, Groningen, The Netherlands

 

 

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