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

Future Publication Title

FPO—Short study blurb would go here

Downloadable link

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).

Future Publication Title

FPO—Short study blurb would go here

Downloadable link

Link to download

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.

Request Data form

Number 1

Download Documents

Data Access Workstream
Downloadable link for position only

Data Request Form
Downloadable link for position only

Data Use Agreement
Downloadable link for position only

PicnicHealth Data Access Policy


Number 2

Attach Completed Documents

  • Drop files here or
    Accepted file types: pdf, doc, docx, txt, Max. file size: 100 MB.
    • Drop files here or
      Accepted file types: pdf, doc, docx, txt, Max. file size: 100 MB.

      Need to get in touch with us?

      medinfo@neurocrine.com
      1-877-641-3461