CAHtalog:
Congenital Adrenal Hyperplasia Patient & Clinical Outcomes in Real - World Practice Settings

CAHtalog is a patient registry consisting of real - world data from individuals living with classic CAH. Neurocrine Biosciences sponsors the registry, partnering with the CARES Foundation and licensing the data directly from PicnicHealth. PicnicHealth obtains consent from individuals to access existing electronic medical records from their prior and current health care providers. The resulting data set is used to construct a longitudinal view of disease course a cross care sites.

The list of data includes:

Demographics
Vitals, labs, and measurements
Symptoms, complications, and comorbidities
Medications, including glucocorticoids and mineralocorticoids
Medical procedures
Health care resource use and visits

The registry data is open to all qualified researchers who are interested in conducting analyses to advance scientific knowledge and improve patient care and clinical outcomes for individuals living with CAH. Access to the data is governed by the Data Governance Scientific Review Committee (DGSRC).

DGSRC Members

Neurocrine Biosciences
CARES Foundation
Academic subject matter experts (SMEs) in the CAH field
PicnicHealth

Requestors are responsible for the design, implementation, and conduct of the analyses including compliance with all relevant institutional and regulatory requirements. All requests for data will follow the path outlined in the Data Access Workstream (link below). Relevant policies and the Data Request Form can also be found in the “Download Documents” section.

We understand the complexities of analyzing real-world data. To support researchers, Neurocrine Biosciences offers third-party scientific research grants that advance medical and scientific knowledge on shared topics of interest. Neurocrine also welcomes your input on key research areas for consideration in our future Neurocrine CAHtalog publications. Email medinfo@Neurocrine.com or speak to a Neurocrine MSL to share your input.

Non-industry researchers (including academic, government, and non-profit research institutions) must submit data requests using the “Submit Form” button below, and are required to complete both the Data Request Form and the Data Use Agreement located in the “Download Documents” section.

Biopharmaceutical industry researchers should submit requests directly to the CARES Foundation at Dina@caresfoundation.org, and must also complete the Data Request Form and the Data Use Agreement available in the “Download Documents” section.