Neurocrine Biosciences Presents Real-World Evidence Mapping the Lifelong, Evolving Impact of Classic Congenital Adrenal Hyperplasia
Key Highlights
- ➤Neurocrine (NBIX) presented real-world CAH data at the Endocrine Nurses Society Annual Symposium.
- ➤10 adults’ records produced more than 2,800 CAH-relevant events across 300+ patient-years.
- ➤Stress-dose adjustments and glucocorticoid management recurred across all 10 patients’ life stages.
- ➤Patient records captured evolving impacts on growth, reproductive health, work, and daily functioning.
- ➤Findings were illustrative, not prevalence estimates or evidence of causality.
Expert Statements
Eiry W. Roberts, Chief Medical Officer, Neurocrine Biosciences
“Classic congenital adrenal hyperplasia is a complex, lifelong disease, and every person living with CAH experiences the condition differently, with needs that change over time. By connecting decades of real-world medical records into longitudinal patient journeys, this analysis reveals how the impact of the condition accumulates across the lifespan and highlights challenges that might otherwise be missed in traditional clinical assessments. These insights may help healthcare professionals anticipate periods when patients could benefit from additional education, support, and coordination from their care team.”
Louise Fleming, Presenting author and Professor of Nursing, University of Virginia School of Nursing
“Nurses are uniquely positioned to understand the full experience of living with adrenal insufficiency — not only the laboratory values and clinical data, but how the condition affects patients and families as they navigate daily life, transitions in care, and changing needs over time. Recognizing the broader patient journey can help us anticipate when additional education, stress-dosing preparation, self-management support or care coordination may be needed. It also allows us to move beyond responding to individual clinical encounters toward providing more proactive, coordinated and patient-centered care across the lifespan.”
Neurocrine Biosciences Presents Real-World Evidence Mapping the Lifelong, Evolving Impact of Classic Congenital Adrenal Hyperplasia PR Newswire
* Decades of real-world medical records highlight the diverse challenges of living with classic congenital adrenal hyperplasia and how needs evolve from childhood through adulthood * Patient records showed growth and bone-age monitoring in childhood; puberty and reproductive health concerns through adolescence and young adulthood; and increasingly diverse clinical needs in adulthood, while treatment and self-management demands persisted across life stages * The analysis captured impacts beyond traditional medical complications, including daily activities, school, work, caregiving, self-management, and access to care * Mapping patient experiences over time may help healthcare professionals anticipate evolving needs and inform education, support strategies, and coordination across care teams SAN DIEGO, Oct. 16, 2026 /PRNewswire/ -- Neurocrine Biosciences, Inc. (Nasdaq: NBIX) today announced new real-world data demonstrating how the clinical and day-to-day impact of classic congenital adrenal hyperplasia can vary among individuals and evolve throughout a patient's life. The findings will be presented at the Endocrine Nurses Society Annual Symposium 2026, taking place Oct. 16-17 in Phoenix.
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