GSD3 is rare yet there are researchers, scientists and doctors carrying out studies with the intention of improving the quality of life for those affected.
Finding out about trials
Your medical team
Medical teams at the hepatic GSD centres will know what trials are coming up. When attending appointments and reviews it is useful to enquire and state a preference for being considered in the future. Your team will always be the first port of call for information about trials.
Internet alerts and general searches
Setting up an alert using key words and search terms will send regular emails at a frequency of your choosing. For those who like to read much medical detail about their condition this can be one way to stay informed. New trials are usually signalled by a press release.
Registers of clinical trials
There are several on-line registers of planned, current and past trials. These can be searched for any possible GSD3 trials. See below.
Guidance on joining a clinical trial
For more information about joining a clinical trial, the NHS gives general advice on their website.
The information will be a little different for studies in very rare conditions; for example, there will usually be less than 100 patients studied and large payments will not be given, only travel and daily expenses will typically be covered.
When enrolling onto to a clinical study we would strongly advise you to take time to read the Informed Consent Form (ICF) very carefully before adding your signature.
Clinical trials registries
Search the US, European and World Health Organisation registries.
For recent status of research that has reached the clinic for human studies, it is worth checking with the three clinical trial registries, using search terms and filters to focus the results on recent studies.