What is the CAH Natural History Study and Registry?

The CAH Registry is a place to store detailed information about patients with a diagnosis of CAH. This registry is for researchers and people with CAH  to better understand their disease. Your contribution will be advancing life-changing initiatives in education, advocacy, and research. The CAH Natural History Study's mission is to learn more about CAH so researchers can work to improve the quality of life and the health of individuals with CAH, and to provide them hope through the promise of new treatments.

 

Who Can Join?

Individuals aged 12+ with diagnosed Congenital Adrenal Hyperplasia are invited to join the registry. Eligibility requires participant to provide online informed consent. For those aged  12 to17, consent by a parent or guardian is also required. While younger children and family members are not able to join the registry directly, we invite you to sign up for our mailing list to be notified of future opportunities to contribute to our efforts.

 

Here is How You Can Contribute

Joining the registry takes commitment, but making a difference is simple and easy. How will you contribute? 

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Consent: Patients will be asked to read and sign a consent or assent form agreeing to participate. If you are under age 18, you will need your parent or guardian sign an additional consent form.

Answer Surveys: As a participant, you will answer questions about your personal experiences with Congenital Adrenal Hyperplasia from your computer or smart phone. We promise you won't have to be active all the time.

Share Medical Records: Participants will be asked to upload physician notes and test results to provide information about confirmation of diagnosis and the history of your disease

Participate in Clinical Trials: The only way to develop new therapeutics is to learn what works for patients like you. Participation in the CAH Natural History Study will help us in pre-matching you to future clinical trials that you may be eligible for.

Stay in Touch: We hope you participate in the registry for many years and enjoy the benefits that sharing data can bring. It is the only way we will know who gets better and why. Your commitment is less than an hour every 6 months and can be spread over time. If you qualify, you may also be eligible to participate in a sub-study where you will be matched with a CAH specialist who will collect additional information through a physical exam and blood collection once per year for 3 years.

 

How Will I Learn About Clinical Trials?

The CAH Patient Registry  will also serve as a recruitment database that can be used to address the difficulty in enrolling patient into clinical trials and connect you with leading researchers and scientists.

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The process of recruiting patients is challenging and can often take a long period of time. If researchers cannot find enough patients to join a study, this can often delay discoveries that can benefit the CAH community at large. Your participation in this registry and potentially, clinical trials, could help the community accelerate that process considerably. Researchers will never contact you directly. The CAH registry coordinator will contact you with information about a study or clinical trial by email or phone according to your preference.

 

Join Now

Please select your age or the age of the CAH patient for whom you are filling out this questionnaire for participation in the CAH Natural History Study

 
 
 
 
In order to comply with the Children's Online Privacy Protection Act, the CAH Natural History Study's website will not knowingly collect personally identifiable information from children under the age of thirteen. By providing personal identifiable information through the website including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen years of age and that you agree to comply with the Privacy Policy. If, at any time, we learn that personally identifiable information has been collected from persons under the age of thirteen without verified parental consent, we will take the appropriate steps to delete such information.
The CAH Natural History Study is unable to prevent children under the age of thirteen (13) from visiting the Website; however, no part of our Website is directed at or intended for persons under the age of thirteen. If you are under the age of thirteen, please do not access the Website at any time or in any manner.