Together we can make a difference for CAH care.

By signing up for this registry, you agree to share your de-identified medical records with CAH researchers. They will only receive records stripped of any information that could be used to identify you personally. Outside of that, no one—including your doctor or insurance company—will be able to see your medical records unless you choose to share them by clicking "Send Records" at the top of your PicnicHealth timeline.

Anyone who has been diagnosed with classic congenital adrenal hyperplasia (CAH) and lives in the U.S. is eligible to participate, including both adults and children with classic CAH.

PicnicHealth works directly with people like you or your child to help collect and manage medical records. That means going out and collecting all of your medical records from different doctors and keeping them up-to-date over time. PicnicHealth will then transform the records into a timeline that makes it easier to find what you’re looking for. When you see the doctor again, PicnicHealth will update the timeline with new records. You can access your PicnicHealth timeline from anywhere and even share it with your doctors with a few clicks.

It takes about 3 to 4 weeks to retrieve most of your historical medical records. The timing mainly depends on how quickly your doctors respond to PicnicHealth's requests for your records.

PicnicHealth’s research platform will be used to collect your medical records and structure the data for research purposes.

PicnicHealth will de-identify your data before sharing it with researchers, stripping away personally identifiable information. This includes, but is not limited to, your name, email, date of birth, phone number, address, and the names of your doctors.  

Everyone who participates in CAHtalog™ will remain anonymous.

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PicnicHealth will collect records going back as far as possible. In most states, doctors are required to keep records for at least 7 years, but many will keep them for much longer. So how far back data collection can go really depends on the record keeping practices of your doctors.

The goal of CAHtalog™ is to advance the understanding of CAH and to support research to improve the quality of care for patients with CAH. Information from medical records is particularly useful for diseases, such as CAH, because it gives insight into what living with the disease is really like and how treatment options work in the real world.

When you first see your timeline, it's possible that some of your medical records are not yet available. That's because PicnicHealth is still working hard to collect them for you. You should be able to see your medical records within 4 to 6 weeks of signing up. After the first month, your timeline will be updated regularly with information from your new doctor visits.

You may choose to delete your medical records from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected]. Once records have been collected for a particular research initiative, you can’t remove them from that research initiative.

Yes. You can view this sample timeline.

You can just enter as many doctors as you remember. The hospital or clinic name is usually enough, and the PicnicHealth team will follow up with you if there’s any confusion. If PicnicHealth finds doctors mentioned in your records who you did not include on the doctor list, you will get an email asking for your permission to request records from that new doctor.

Yes! The CAHtalog™ registry make every effort to share published results back with you.

In the first month, some records might be missing because PicnicHealth is still collecting them for you. After the first month, if you suspect that records are still missing, you can let us know about those records by clicking "Request Records" at the top of your timeline.

PicnicHealth takes privacy very seriously. Your personal information is never shared without your explicit permission. Your medical records are kept safe using the highest encryption standard available: 256-bit SSL. This is the same technology that banks use to keep account information safe.

Medical records show what’s happening when doctors see patients, so they can be really helpful for understanding how medical care is delivered in the real world. They also contain a lot of information about how you experience CAH —your symptoms, your health status, and your treatments. Putting all this information together for a diverse group of patients will allow researchers to see patterns that no one doctor can see on their own.

PicnicHealth will collect medical records from all the U.S. doctors, hospitals, and clinics that you tell us about. PicnicHealth does not collect dental or optometry records.

When you sign up, you’ll read and sign a form that authorizes PicnicHealth to request your medical records on your behalf. You can e-sign this form online -- no printing or mailing involved. Your doctor will then know that it's okay to share your medical records with PicnicHealth.

This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. In this research, we are only looking at data from medical records produced during your normal visits to the doctor. The goal is to better understand how patients across the U.S. are being treated and why a disease looks different in different people. This will not change your current care.

No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or on an iPad.

A disease registry is a standardized collection (database) of information about individuals with a specific diagnosis or condition.

Yes! You will be able to view your imaging files right in the PicnicHealth timeline.

PicnicHealth will update your medical records regularly. To keep your records most up-to-date, you can always tell PicnicHealth when you have seen the doctor. Just click the “Request Records” button at the top of your timeline, and PicnicHealth will retrieve your new records for you.

Your PicnicHealth timeline provides a single source of information for you and your doctors. It is a tool to help you coordinate care and understand your own health. You can share your timeline with any of your doctors with a few clicks. The doctor will receive a secure link and get access to your medical history.

CARES Foundation endorses the CAHtalog™ registry and has helped in the planning and implementation of the registry. The Foundation supports research that aims to better support and understand CAH.

There will be no cost to you associated with your participation in CAHtalog™.

The CAHtalog™ registry is sponsored by Neurocrine Biosciences, Inc.

At the top of the timeline, click on "Doctors" to add new doctors or medical facilities. PicnicHealth will then collect records from your new doctors.

Yes. Your participation in this research is completely voluntary and you can withdraw at any time. If you choose to stop participating, your medical records will remain available for you through your PicnicHealth account. At that time PicnicHealth will stop collecting any new medical records. You can download copies of your records at any time. You can always tell PicnicHealth to delete your medical records, although the de-identified information that has already been shared with CAH researchers can’t be deleted.

Additional research opportunities can be found on CARES Foundation website – visit https://caresfoundation.org/clinical-trials-an-overview/ongoing-clinical-trials/ for more information.

Not at this time. We are currently piloting the registry only in patients with classic CAH. Depending on the success of the registry, we hope to open it to patients with non-classic CAH in the future.

We need the last 4 digits of your social security number to help with the record request process. When requesting records from your doctor's office, they need certain pieces of information to confirm your identity and confirm that you authorized us to get these records; most offices ask to confirm the date of birth and the last 4 digits of SSN, and if either of these does not match what the office has on file, they won't release the records.