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Together we can make a difference for CAH care.

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!

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Study Eligibility: You can enroll in this study if you or your child have been diagnosed with classic CAH and have received medical care in the U.S. in the past 7 years.

About the CAHtalog™ Registry

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.

How your medical history can help:

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.

What you'll get

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.

What you'll need to do:

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.

PicnicHealth

How it Works

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.

1

Gather health history

With your ok, we contact your care providers to collect your entire health history - a 6 week process!

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 CAH researchers.

4

Receive the benefits

You'll get a copy of your fully digitized medical records, and updates on future research findings.

Privacy and Security

At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private.  Here’s our promise

HIPAA compliant

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.

Military grade encryption

We use the highest security standards available, 256-bit encryption.

HITRUST certified

We continuously pass the most trusted healthcare security reviews.

Independent party ethics review

PicnicHealth uses an IRB (Institutional Review Board) to protect and act in the best interests of our participants.

REAL PEOPLE, REAL STORIES
“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
REAL PEOPLE, REAL STORIES
“I love that PicnicHealth gives me the chance to access all of my medical records on my cell phone. This gives me the confidence to advocate for myself if my parents are not with me. I plan to keep using this program even after I graduate high school and head to college.”
Kambri
Sickle Cell Research Participant
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 this 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 with classic CAH.

Study Basics
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 the purpose of the registry?

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.

Study Basics
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
Will I see the registry results?

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

Study Basics
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
Can medical records really help with research?

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.

Study Basics
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
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. 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.

Study Basics
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
What is a disease registry?

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

Study Basics
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
How is CARES involved in the registry?

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.

Study Basics
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
Who is funding the registry?

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

Study Basics
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
Where can I find more information about other CAH research opportunities?

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

Study Basics
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.

Basics
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

Share your history to change the history of CAH

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Have questions about how it works or PicnicHealth?
Email us at [email protected].