Frequently Asked Questions
Who will be able to see my medical records?

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.

Data and Privacy
How long will it take to get my medical records?

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.

What to Expect
What does PicnicHealth do?

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.

About PicnicHealth
Who can join the CAHtalog registry?

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 (and their caregivers) with classic CAH.

About The CAHtalog Registry
What is PicnicHealth’s role in CAHtalog™?

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

About PicnicHealth
What information will be de-identified?

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.

Data and Privacy
How far back will you collect historical records?

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.

What to Expect
What is a patient registry?

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

About The CAHtalog Registry
Can I delete my medical records from PicnicHealth?

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.

Data and Privacy
When I first see my PicnicHealth timeline, will it be complete?

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.

What to Expect
Can I see what my records will look like in my PicnicHealth account?

Yes. You can view this sample timeline.

About PicnicHealth
What if I can’t remember the names of all my doctors?

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.

About PicnicHealth
Is this a clinical trial?

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.

About The CAHtalog Registry
Will my medical records be secure?

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.

Data and Privacy
What should I do if I notice there are medical records missing from my PicnicHealth timeline?

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.

What to Expect
Will I see the registry results?

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

About The CAHtalog Registry
What kinds of medical records will you collect?

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.

What to Expect
How will my doctor know it’s okay to share my 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.

About PicnicHealth
How is CARES involved in the registry?

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.

About The CAHtalog Registry
Will I get records from scans and imaging?

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

What to Expect
What if my doctor doesn’t have electronic records?

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

About PicnicHealth
Who is funding the registry?

The CAHtalog registry is sponsored by Neurocrine Biosciences, Inc.

About The CAHtalog Registry
Will PicnicHealth update my medical records every time I see the doctor?

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.

What to Expect
How can I use my PicnicHealth timeline?

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.

About PicnicHealth
Can I participate if I have non-classic CAH?

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.

About The CAHtalog Registry
Will joining CAHtalog™ cost me anything?

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

About PicnicHealth
What should I do if I see a new doctor?

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.

What to Expect
Can I stop participating in the registry?

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.

What to Expect
Can I participate if I have non-classic CAH?

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.

Why does PicnicHealth need the last four digits of my SSN?

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.

Data and Privacy

Make your voice heard through the CAHtalog Registry!

CARES Foundation, Neurocrine Biosciences and PicnicHealth have partnered to establish the CAHtalog (Congenital Adrenal Hyperplasia: Patient and Clinical Outcomes in Real-World Practice Settings) registry.

CAHtalog is a patient registry, or collection of clinical patient data, for classic congenital adrenal hyperplasia (CAH) patients. Its mission is to advance CAH clinical research and in turn improve the quality of life for those living with classic CAH.

By participating and sharing your unique patient journey through de-identified medical records (all personal details that could identify you have been stripped away) and optional surveys, you can play a crucial role in helping improve the lives of the CAH patient community.

Learn More
Study Eligibility: The CAHtalog registry is open to adults and caregivers on behalf of their children living with classic CAH and who receive medical care in the US.

“CAH researchers need to understand our real life experiences from the diverse voices in our community. The CAHtalog registry is a meaningful way to contribute that experience to research and help inform future care and treatments for CAH patients.”

Dina Matos
CARES Executive Director

“CARES Foundation is collaborating with Neurocrine Biosciences on the development of the CAHtalog™ Registry. Utilizing PicnicHealth’s research platform, this first-of-its-kind registry will enable patients and their families to easily share their real-world data for the advancement of CAH research. We’re excited to participate in the project and see the positive impact of the registry.”

Dr. Karen Lin Su
CARES Medical Director

“The more CAH patients that register, the more data will be available for research.CAH has come a long way from my birth and that is all due to research and patients being willing to share their CAH journey.”

CAHtalog Registry  Participant

“CAH treatments are subpar and current research shows poor quality of life for many living with CAH. I saw an ad for CAHtalog, researched it, and felt my data was safe and would be used to study the history of my illness and help others. I couldn’t say no. Plus, the gift cards are a nice benefit for filling out simple surveys regarding my condition and how I feel.”

CAHtalog Registry  Participant

“CAH is a complex condition to manage. PicnicHealth allows me to keep track of all of my medical history and makes it easy to share my information with new doctors. I am very grateful to have access to the PicnicHealth platform and to know that CAHtalog researchers are using this data.”

CAHtalog Registry  Participant

What is the CAHtalog Registry?


Sign up and participate in as little as ten minutes!

Just answer a few questions about you or your loved one including:

  • First and last name
  • Date of birth
  • Last four digits of social security number (this is commonly asked for by medical record departments to verify identify)
  • Names of primary care and endocrine doctors seen in the last 2 years

With your consent, PicnicHealth will do all the hard work of collecting medical records from your clinicians on your behalf–including paper-based records, imaging, and doctors’ notes. There are no additional appointments, labwork, or tests required to participate in this registry.

All CAHtalog participants will receive digitized copies (including PDF’s) of your medical records from not just one, but multiple medical providers and institutions - all organized in an easy-to-read timeline.

You can also earn up to $150/year by participating in short, optional bi-annual health surveys.

Join Now

Why is it important for CAH researchers to access de-identified clinical data from medical records from CAH patients?

Medical records form the foundation of clinical research and can help answer key questions such as:

  • How do steroids impact the health of patients living with CAH over time?
  • What are the comorbidities that can change over time (e.g., changes to height and weight) and how do they impact people living with CAH?
  • What is the ideal dose and type of steroids for people living with CAH?

Given the rarity of CAH, it is currently very challenging for CAH researchers to access clinical data (including medical records) about patients’ experiences. There are still major gaps in the understanding of CAH.

The CAHtalog registry aims to bridge this gap, by providing qualified researchers from the broader CAH research community with the clinical data they need to enhance care and quality of life for the CAH community. By analyzing data from de-identified medical records, researchers can improve clinical guidelines, work to develop new treatments, and help clinicians and policymakers better understand the burden and unmet needs of people living with CAH.

Tell us about your care

Help us understand your health by confirming your diagnosis, and providing the name of your healthcare providers. At minimum, all we’ll need is your most recent primary care provider and endocrinologist. PicnicHealth handles all the paperwork and phone calls to collect and compile your complete health history– including paper-based records, imaging, and doctor’s notes. All this information will be securely transferred to a private portal, which only you can access.

Receive a comprehensive Timeline of your health

Once all the information is collected, it’s transformed into a digital Timeline, offered at no cost to CAHtalog registry participants. The Timeline is a powerful tool that gives you control and instant access to your complete medical records.

You can securely share access to your records to trusted individuals whenever you need to, ensuring the right people have the right information. This may especially help if you’re facing a medical emergency in an out-of-area hospital, or see a new provider that doesn’t already have access to your medical records. Plus, we’ll keep it updated regularly.

Share your experience and be compensated for your time

By joining the CAHtalog registry, you will have the opportunity to complete optional short (10-15 minutes long) twice a year surveys about health and daily life, right from your PicnicHealth account. These surveys are not just a way for you to earn Visa gift cards (up to $150/year!)– they’re also a crucial tool for researchers, helping them understand aspects of your health that aren’t captured in medical records.

Protecting your privacy

We take privacy seriously. When your health data is gathered, we make sure to strip away any personal details that could identify you, using a process called de-identification. This way researchers get the valuable health information they need, without any of the private information they don’t. Your de-identified data will only be shared with registry researchers. You can learn more about this in our terms and conditions.

Help develop new treatments for CAH and improve quality of life

Typically, patient registry data is not shared with outside researchers. However, Neurocrine and CARES have committed to sharing de-identified data from CAHtalog to qualified researchers from the broader research community to advance CAH clinical research, and in turn, help develop new treatments for CAH.  Your participation can help further this commitment.

The power of community in research

Learn more about our CAH Change Champions and advocacy partners and how you can get involved!

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