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 healthcare providers. The resulting dataset is used to construct a longitudinal view of disease course across care sites.

See below a list of data collected.

Demographics
Vitals, labs, and measurements
Symptoms, complications, and comorbidities
Medications, including glucocorticoids and
mineralocorticoids
Medical procedures

Healthcare resource use and visits
Patient-reported outcomes (PROs) or
observer-reported outcomes (ObsROs)
- EQ-5D-Y and EQ-5D-5L
- PedsQL and PedsQL Family Impact
- Survey: Menstrual Cycle (Likert Scale), Acne VAS, Hirsutism CAS, Fatigue VAS

This program 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 accessing 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 downloadable section.