Together we can make a difference for LC-FAOD care.

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.

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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.

About the Study

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).

You can join if you’ve been diagnosed with any type of LC-FAOD:

CPT I (carnitine palmitoyltransferase I) deficiency
CACT (carnitine-acylcarnitine translocase) deficiency
CPT II (carnitine palmitoyltransferase II) deficiency
VLCAD (very long-chain acyl-CoA dehydrogenase) deficiency
TFP (trifunctional protein) deficiency
LCHAD (long-chain 3-hydroxy-acyl-CoA dehydrogenase) deficiency

How it works

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.

1

Gather health history

With your ok, we contact your care providers to collect your health history—imaging files, test results, and doctors' notes.

2

Anonymize your data

Our rigorous multi-step process wipes clean all identifying information. See our Privacy Pledge.

3

Compile for research

We combine your anonymous health data with others to create an invaluable dataset—only for researchers.

4

Receive the benefits

You'll get a copy of your fully digitized medical records, and updates on future research findings.

Privacy and Security

At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:

HIPAA compliant

We protect your information by using end-to-end encryption and abiding by HIPAA compliant practices - the same privacy and security practices that your doctor uses.

Military grade encryption

We use the highest security standards available, 256-bit encryption.

HITRUST certified

We continuously pass the most trusted healthcare security reviews.

3rd party ethics review

PicnicHealth uses an IRB (Institutional Review Board) to protect and act in the best interest of our volunteers.

What is PicnicHealth?
PicnicHealth is a service specialized in helping patient collect and manage their medical records.

How is PicnicHealth related to UnitedHealthcare?
UnitedHealthcare is partnering with PicnicHealth as part of a Family Engagement Center initiative. Your child will receive PicnicHealth's services for free, which includes getting a PicnicHealth timeline with all of your child’s medical records in one place.  

What does PicnicHealth do? 
PicnicHealth collects your child’s medical records on your behalf and helps you manage them in a PicnicHealth timeline. When you see the doctor again, we’ll update your PicnicHealth timeline with the new records. You can access your medical records from anywhere and even share them with your child’s doctors with a few clicks.

Can I see what a PicnicHealth account looks like?
Yes. You can view this sample timeline.  

Will PicnicHealth cost me anything?
You’ll receive PicnicHealth’s service free of charge in partnership with UnitedHealthcare during the first year pilot program. One year after you start using PicnicHealth, your child’s PicnicHealth timeline will continue to be available, but no new records will be added. If UnitedHealthcare and PicnicHealth do not continue their partnership, you will have the option of subscribing directly.

How can I use my PicnicHealth timeline?
The PicnicHealth timeline provides a single source of information for you, your child’s doctors, and your UnitedHealthcare Family Advisors and Clinicians. It is a tool to help you coordinate care and navigate the diagnostic journey and can be shared with a few clicks. When you share your child’s medical records, the recipient will receive a secure link and get instant access to your child’s medical history.

Share your history to help change the history of LC-FAOD

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Have questions about how it works or PicnicHealth?
Email us at [email protected].