With the CAHtalog™ registry, you get access to your complete medical records and you can change what researchers know about classic CAH to help improve care and treatments - plus earn up to $150 a year when you complete optional surveys!Join Now
The CARES Foundation, partnering with Neurocrine Biosciences and PicnicHealth, has established the CAHtalog™ (Congenital Adrenal Hyperplasia: Patient and Clinical Outcomes in Real-World Practice Settings) registry. The goal of the registry is to support patient-centered research that will enhance the scientific community’s foundational knowledge of classic CAH and ultimately improve the lives of patients who live with it every day. Participants can contribute to classic CAH research and share their unique patient journey and voice without the need for in-person visits - and all information will be kept private and secure. After enrollment, participants will have ready access to their digital medical records in one place.
More than anything, researchers need data from actual patients with classic CAH – lots of data – to identify patterns and find potential solutions to health challenges that classic CAH causes. Your de-identified records could help researchers:
Better understand how classic CAH is managed today and how future care and treatments could be improved
Understand your firsthand classic CAH journey, via patient or caregiver reported outcome surveys.
Access to your digitized medical records - yours to keep, use and share as you wish - such as with your current or future doctors.
Earn up to $150 a year with the completion of optional surveys.
Create a free PicnicHealth account and sign the consent forms (takes less than 10 minutes). Provide the last 4 digits of your SSN and the names of your doctors and we’ll take it from there. We need this information to get your records from your doctors.
It takes just a few minutes to contribute to CAH research, and your participation is completely anonymous. No commitment - you're free to opt out at any time and we will stop collecting your data.
With your ok, we contact your care providers to collect your entire health history - a 6 week process!
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 CAH 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
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.
We use the highest security standards available, 256-bit encryption.
We continuously pass the most trusted healthcare security reviews.
PicnicHealth uses an IRB (Institutional Review Board) to protect and act in the best interests of our participants.