Did you know that your or your child’s unique medical history could have a positive impact on the future of care for the GSD community? To help deepen what researchers know about GSD and get free access to your complete medical records via your PicnicHealth timeline, sign up for GSD Odyssey.
Study Eligibility: You can enroll in this study if you or your child have been diagnosed with GSDIa or GSDIII and have received medical care in the U.S. in the past 7 years.
Ultragenyx and PicnicHealth are partnering to conduct innovative research that aims to better understand how GSD (Glycogen Storage Disease) affects real people like you. Non-clinical natural history studies, such as the GSD Odyssey, provide important information for researchers that can help:
If you would like to help, enroll online in the GSD Odyssey study to provide anonymous medical record data and help change the future of care for GSD!
For Spanish, click here (para español, haga clic aquí).
If you've been diagnosed with GSDIa or GSDIII and receive care in the US, it takes just a few minutes to sign up.
No commitment - you're free to opt out at any time and your data will not be included in future studies.
With your ok, we contact your care providers to collect your health history —imaging files, test results, and doctors' notes.
Our rigorous multi-step process wipes clean all identifying information. See our Privacy Pledge.
We combine your anonymous health data with others to create an invaluable dataset — only for researchers.
You'll get a copy of your fully digitized medical records, and updates on future research findings.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise: