Neurocrine Biosciences Leverages PicnicHealth to Reveal Critical Care Gaps for Patients with Rare Genetic Condition
Technology-enabled research approach and AI-powered analysis identify unmet needs in patients with congenital adrenal hyperplasia
SAN FRANCISCO, July 15, 2025 /PRNewswire/ -- PicnicHealth, a health technology company dedicated to advancing the next generation of non-interventional research, today announced its research collaboration with Neurocrine Biosciences, Inc. (NASDAQ:NBIX), the CAHtalog® Registry, identified an unmet need in patients with classic congenital adrenal hyperplasia (CAH). Using PicnicHealth's AI-powered technology to curate medical records and enable remote participation, the study revealed that CAH patients require lifelong, continuous adjustments to glucocorticoid dosing—the current standard treatment—to maintain condition control.
CAHtalog® was founded in 2021 by PicnicHealth and Neurocrine, in collaboration with the CARES Foundation, to establish a U.S.-based registry that helps patients with CAH by advancing patient-centered research and enhancing the scientific community's foundational knowledge of the condition. CAH is a rare genetic condition that affects adrenal gland function, disrupting hormone production and impacting growth and development. Conducting longitudinal studies on rare diseases is challenging for researchers using site-based models due to the wide geographic spread of patients. Tech-enabled research models improve access and participation by removing the burden of in-person visits over extended periods.
"This study shows how researchers can minimize patient burden while still gathering valuable, long-term insights to answer their research questions," says Dan Drozd, MD, MSc, chief medical officer at PicnicHealth. "New technologies, including AI, make it possible to integrate data from across patients' medical records, expanding knowledge on this condition and providing direct benefits to participating patients."
PicnicHealth conducts non-interventional research by collecting medical records from anywhere patients receive care and enabling patients to complete research activities through an intuitive app. The app also features an AI assistant that empowers patients to navigate their medical records with ease. This novel approach to registries helps life sciences companies answer their research questions more efficiently while fostering long-term patient engagement. The CARES Foundation proved crucial for successfully recruiting and engaging CAH patients in the study.
"We're always looking for new ways to support our patients," says Dina Matos, executive director of the CARES Foundation. "This registry gives our community the opportunity to contribute their valuable data to advance CAH research, while also empowering them with tools to better manage their condition throughout their health journey."
In addition to this key finding on glucocorticoid dosing, additional results from the CAHtalog® registry on treatment patterns and condition progression were presented earlier this week at ENDO 2025 in Treatment Patterns and Changes in Health States in Patients with Classic Congenital Adrenal Hyperplasia: An Analysis of Data from the CAHtalog® Registry and in the poster ADRENAL (EXCLUDING MINERALOCORTICOIDS): Adrenal Insufficiency and CAH III.
Patients interested in joining the CAHtalog® registry and advancing critical insights like these can learn more here.
CAHtalog® is a registered trademark of Neurocrine Biosciences, Inc.
About PicnicHealth
PicnicHealth is a leading health technology company dedicated to advancing the next generation of non-interventional research. To date, the company's direct-to-patient approach and innovative AI and technology platform have enabled 12 of the top 20 largest life science companies to run more efficient non-interventional research. PicnicHealth has given tens of thousands of patients access to tools and virtual care services to simplify their care journey. PicnicHealth was recently named one of the World's Best Digital Health Companies by Newsweek, "Best MedTech Startup" by MedTech Breakthrough, and "Best AI-enabled Life Sciences Solution" by Global Health & Pharma. The future is here with PicnicHealth. To learn more, visit picnichealth.com.
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SOURCE PicnicHealth