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.
“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.”
“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.”
“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.”
“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.”
“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.”
“PicnicHealth offers a next generation platform to track my health which gives me data points that assist in the trajectory and management of CAH.”
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.
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!
Voices of the Classic CAH Community
Explore personal journeys, insights, and resilience within the CAH community through our blog posts.
Prepared for the 2 Percent
For Marc, living with congenital adrenal hyperplasia (CAH) has been a journey filled with challenges, resilience, and careful management. His diagnosis came at age 3, but it wasn’t until his younger brother's health scare as a newborn that the family realized both siblings had CAH. It all started with some unusual symptoms
Maddox's Journey: Love, Challenges, and Advocacy in the World of CAH
Walking through life with salt-wasting congenital adrenal hyperplasia (CAH) brings its own set of ups and downs. For Taylor and her son, Maddox, it’s a path marked by sudden storms and sunny days, a mix of medical emergencies and moments of pure childhood joy. Here’s their story, told with the warmth and honesty that Taylor brings to every conversation.
Advice for a Parent Raising a Rare Child, From a Rare Adult
Parents raising a child with a rare condition they don’t have can sometimes feel like they’re on a journey without a map. Without firsthand experience of what their child is going through, they may sometimes feel unsure how to provide the best support.
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