You could make a difference and drive research for the next propionic acidemia breakthrough.
Your child's medical records can help change what we know about propionic acidemia (PA).
Study Eligibility: You can enroll in this study if your child has been diagnosed with propionic acidemia (PA), is between 1 - 6 years old, and has received medical care in the U.S. in their lifetime.
Your Privacy: When you sign up for PicnicHealth, we protect your information. The information that could identify you in your medical records will never be shared, and only de-identified data will be shared with researchers. We’ll never share or sell your information. Read more about how we protect your privacy below.
About the research study
Moderna and PicnicHealth are working together to advance propionic acidemia (PA) research. The goal is to better understand how propionic acidemia (PA) appears in the real world. With your consent, PicnicHealth will collect your medical records and partner with Moderna who will use your de-identified data to better understand propionic acidemia (PA).
Inform development for future treatments
Understand frequency and severity of clinical events
Identify propionic acidemia (PA) and its signs and symptoms
How it works
If your child has been diagnosed with Propionic Acidemia (PA) and has received care in the US, your child is eligible to participate in this research. It takes just a few minutes to sign up.
We appreciate and value your time contributing to this research. Please know that you can opt out at any time by emailing [email protected]
1
Gather health history
Once we’ve received your permission to collect your medical records, we contact your care providers to collect your health history—imaging files, test results, and doctors' notes.
2
De-identify 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 digital copy of your medical records and updates on how your involvement in this research study is making a difference for patients.
Support propionic acidemia research through PicnicHealth
PicnicHealth believes that everyone should live longer and healthier lives. We can accelerate medical innovation by making real-world health insights accessible to researchers.
Empower change
We enable everyone to be a part of new medical discoveries by providing the tools and technology to collect and deliver health insights.
Respect privacy
All health records are processed by our military grade encryption and stored on our secured system. See more information below.
Practice responsibly
We are HIPAA compliant andhe Institutional Review Board also regularly reviews our practice.
We pledge to protect your privacy.
So you can focus on making an impact.
Being transparent about our data practices is important to us. We want you to completely understand how we use your information.
What we collect and how we get it.
With your permission, we work with your care providers to collect anything related to your health history: imaging files, test results, doctor’s notes in both digital and paper format. Your doctors are provided with our highly secure private portal to transfer the information to us.
How we make it anonymous.
We extract only the information that is valuable for researchers and replace anything identifiable with a randomized ID number through our proprietary, multi-step, de-identifcation technology. Your de-identified health dataset is then compiled with many others into a comprehensive data report.
Who can see what.
Only your de-identified health data will be shared with researchers who are studying the condition that you have. Your identifiable information is never shared with anyone. We will never share or resell your health data to insurance companies, marketers or employers. See our Terms and conditions.
You’ll be the only one with access to your consolidated, digitized health records, although this is a great resource to share with your doctors, loved ones, and caregivers.
