Prilenia Therapeutics announced on May 26, 2026 the signing of a Data Use Agreement with the CHDI Foundation, a nonprofit biomedical research organization exclusively dedicated to Huntington’s disease. Under this agreement, the Dutch biotech is providing CHDI with clinical data from the placebo arms of two of its studies, PRIDE and PROOF.
What the agreement covers
CHDI receives a worldwide, non-exclusive license to use individual patient-level data from the placebo populations of both studies, along with full ownership of any research results it generates from them. The foundation will also have the option to make the data available to qualified third-party research institutions. Prilenia retains ownership of the underlying data, which remains anonymized and securely protected.
About Huntington’s disease
Huntington’s disease is a hereditary neurodegenerative disorder caused by an expansion of CAG trinucleotide repeats in the huntingtin gene on chromosome 4. This mutation produces an abnormal protein that progressively destroys neurons, leading to irreversible decline across motor function, cognition, and behavior. Individuals carrying more than 39 CAG repeats are highly likely to develop the disease, and intermediate alleles can expand across generations, particularly through paternal transmission.
The disease has a global prevalence of approximately 4.88 per 100,000 individuals, though this varies significantly by region. In European populations, HD affects roughly 10 to 13 people per 100,000, while in East Asia the figure drops to just one to seven cases per million. One of the most clinically challenging aspects of HD is its prolonged pre-symptomatic phase: cognitive, behavioral, and motor changes can emerge well before a formal diagnosis, making early interdisciplinary intervention critical yet difficult to implement in practice.
No treatment currently exists that modifies the course of the disease. Available options remain limited to symptom management and palliative care. Research activity has grown over the decades, though significant structural limitations persist. A 2025 bibliometric review of over 1,500 publications spanning 1966 to 2025 found that HD research remains heavily concentrated within a small number of countries and author groups, with the United States accounting for the largest share of output by a wide margin. Cross-regional collaboration is limited, psychological and mental health dimensions of the disease are underrepresented in the literature, and health-related quality of life data remains scarce. In one cross-sectional study cited in the review, 33% of HD patients reported symptoms of depression, yet mental health endpoints are rarely included in clinical trials focused on motor or cognitive outcomes.
It is in this context that Prilenia’s data-sharing initiative carries weight. By making placebo-arm patient data from two clinical studies available to CHDI, the agreement directly addresses the scarcity of high-quality, reusable clinical datasets. CHDI intends to use the data to better characterize placebo effects in HD trials, which could improve the design of future studies and strengthen the validity of external comparator approaches, including those built on the Enroll-HD registry.
Prilenia also plans to initiate a registrational Phase 3 study of pridopidine in early to mid-stage HD in the second quarter of 2026, a trial whose design could directly benefit from analyses generated under this agreement.
Masna H, Konda M, Ganti L. Huntington’s Disease Research Over Six Decades: Global Insights, Gaps, and Future Directions. Cureus. 2025 Nov 23;17(11):e97567. doi: 10.7759/cureus.97567. PMID: 41446471; PMCID: PMC12724639.