Change the future for the CAH community and get your medical records at your fingertips.

We make it easy for you to organize your medical records while contributing to important research for Congenital Adrenal Hyperplasia (CAH). You’ll earn $50 for joining once you qualify, with the option to participate in additional compensated surveys.

Join the CAHtalog® Registry

Who is eligible to join?

Adults living with Classic CAH or caregivers of children living with Classic CAH who receive medical care in the U.S.

How does the CAHtalog® Registry work?

Sign up in just ten minutes—PicnicHealth takes care of the rest.

You'll answer a few quick questions, including the names of your current or most recent primary care physician (PCP) and endocrinologist, and sign a short consent form so we can gather your medical records and add you to the registry.

Questions? Issues signing up? Email help@picnichealth.com anytime for a rapid response.

Sign up online in less than 10 minutes

We handle the work of gathering your records

Contribute your data to important CAH research

Empower yourself with your medical records organized into one simple app

CAHtalog® is a collaborative effort

Neurocrine Biosciences is a leading neuroscience-focused, biopharmaceutical company with a simple purpose: to relieve suffering for people with great needs. As the registry sponsor, Neurocrine Biosciences leads the CAHtalog® study design & analysis and provides funding for the registry.

CARES Foundation leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.

PicnicHealth is CAHtalog®’s trusted technology partner to securely collect and organize your medical records—for you and for researchers.

Early CAHtalog® results from White PC, Sen GP, Tang F, et al. Natural History of Classic Congenital Adrenal Hyperplasia: Results from Pediatric and Adult Patients in the CAHtalog® Registry. Presented at the Endocrine Society Annual Meeting; June 1–4, 2024; Boston, MA

Help turn early patterns into real breakthroughs!

Our early results are exciting, but we need more CAHtalog® participants to uncover greater insights with more robust statistics. Your medical records can help advance CAH research, including:

• Quantify the impact of steroids & elevated androgens on people with CAH
• Generate key data to help clinicians better treat CAH
• Help society recognize the importance of CAH

Participation in other CAH registries is encouraged!

CAHtalog® collects extensive medical records, while other registries focus on in-person visits and lab tests. Each registry helps answer different research questions - and together, they give researchers the information they need to see the full picture of CAH.

Sign up today in less than 10 minutes. Minimal effort, lasting impact.

Join the CAHtalog® Registry

Your medical records, simplified

PicnicHealth organizes your medical records from nearly all your providers, giving you a clear and interactive view of your health history.

Easily track your lab values, medications, images, and doctor’s notes—all from your electronic device.

Empower yourself with information on your health. Track trends over time. Make more informed decisions with your doctor.

Share records seamlessly

With PicnicHealth, securely share your medical records with trusted loved ones or doctors.

Share by email, text, or direct link, while staying in control of who sees your records​.

If you need emergency care while traveling, ER doctors often can’t access your records—but with PicnicHealth, you can instantly share your records from your phone.

With CAH, having your full medical history on hand can make all the difference in getting the right care—wherever you are, when you need it.

Voices of the Classic CAH Community

Explore personal journeys, insights, and resilience within the CAH community through our blog posts.

Dina Matos
CARES Executive Director

FAQs

Who can sign up for CAHtalog?

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.

What is a disease registry?

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

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.

Will I see the registry results?

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

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.

Who is funding the registry?

The CAHtalog registry is sponsored by Neurocrine Biosciences, Inc.

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.

What does PicnicHealth do?

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.

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.

I already use a different EMR system, how is the PicnicHealth Timeline different?

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.

Will joining CAHtalog cost me anything?

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.

Can medical records really help with research?

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.