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.

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

This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. This registry will only review data from medical records produced during your visits to the doctor – in other words, there are no additional labs, tests, or appointments required for you to participate. You will also be asked to complete optional, short, online paid surveys.

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

Not only does the CARES Foundation endorse this registry, but CARES has played a significant role in both the planning and implementation stages. The Foundation is committed to supporting research efforts that are focused on improving support for and understanding of CAH.

The CAHtalog registry is sponsored by Neurocrine Biosciences, Inc.

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.

PicnicHealth works directly with people like you to help collect and manage your medical records. When you consent to participating in a PicnicHealth study, you are giving PicnicHealth permission to do all the work of collecting, organizing, and updating all of your medical records from your different doctors on your behalf. PicnicHealth will then transform those records into a digital Timeline that makes it easier to find what you’re looking for. When you see the doctor again, PicnicHealth will update your Timeline with new records. You can access the PicnicHealth Timeline from anywhere you have internet access and securely share it with your doctors, care team, and family members with a few clicks.

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

PicnicHealth is a patient-centric platform built to help alleviate the stress of organizing complex medical care.

PicnicHealth gathers and organizes medical records, including paper-based records, doctor’s notes, labs, imaging, and trends from all of your providers and sites of care regardless of health system affiliation. The Timeline allows you to securely share your medical record information with your care team and/or family members in an organized streamlined application.

Most EMR systems, conversely, are typically health system-specific and only aggregate your information from one facility or facilities within the same health system. The features enabled in your EMR system vary by facility and typically do not include features like imaging and lab trends across health systems over time.

Lastly, PicnicHealth enables patients to contribute their healthcare journey to leading medical researchers, while other EMR systems are primarily a patient engagement application and do not have a feature that allows you to contribute to research.

No, there is no cost to participate. You’ll receive PicnicHealth’s medical record collection service at no cost as part of your ongoing participation in the CAHtalog registry. If you would like to continue to have PicnicHealth collect your records to keep your files up to date, you may enroll in the service as a customer once the study is complete.

Medical records document what’s actually happening when doctors see patients, so they can be really helpful for understanding how care is delivered. They also contain a lot of information about classic CAH – your symptoms, health status, and medication(s). Putting all of this information together from a diverse group of patients will allow the scientific community to see patterns that no one doctor can see on their own, enabling the community to improve care for individuals living with classic CAH.

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 health. You can share theTimeline with any of your doctors, family members, or care team with a few clicks. That person will receive a secure link and get access to your medical history. You also have the ability to also discontinue or pause their access.

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

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

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.

Yes. You can view the sample Timeline here: https://demo.picnichealth.com/research

That's ok. 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 records who you did not include on your list, you will get an email asking for your permission to request records from that new doctor.

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

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. If you suspect that any information on your Timeline is incorrect, please contact us at help@picnichealth.com.

PicnicHealth will never share your records without your explicit consent. By signing up for CAHtalog, you're agreeing to share your de-identified data with CAH researchers.

You will be the only person who can access your medical records on PicnicHealth. No one — including your doctor or insurance company — will be able to see your medical records unless you choose to share them by clicking "Share Records" at the top of the PicnicHealth Timeline.

PicnicHealth takes privacy very seriously. 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.

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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. Instead, you will be assigned a unique identifier—a random string of numbers and letters.

Everyone who participates in CAHtalog will remain anonymous.

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It takes about 4 to 6 weeks to retrieve most historical medical records. The timing mainly depends on how quickly your doctors respond to PicnicHealth's requests for records.

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 PicnicHealth can go really depends on the record-keeping practices of your doctors.

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You may choose to delete your medical records from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at help@picnichealth.com. However, any data that has already been shared with a research partner, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.

Contact us at help@picnichealth.com.