Provide your or your child’s anonymized medical records to research. Change what researchers know about LC-FAOD, plus get free access to your complete medical records in your PicnicHealth timeline.
Study Eligibility: You can enroll in this study if you or your child have been diagnosed with any form of LC-FAOD 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 LC-FAOD (Long-chain Fatty Acid Oxidation Disorders) affect real people like you. Understanding how a disease is managed and treated and the effects of these approaches in the real-world, combined with understanding your personal experience based on your answers to questionnaires, can help address some important questions that could improve the future of LC-FAOD care.
PicnicHealth gives you access to your complete medical history by collecting, digitizing, and encrypting all of your medical records, from all of your doctors and other healthcare professionals (e.g., dietitians). Ultragenyx is a biopharmaceutical company that does scientific research to develop new treatments for a range of rare medical conditions, including LC-FAOD.
For Spanish, click here (para español, haga clic aquí).
If you've been diagnosed with LC-FAOD 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: