Research
Research
Research is essential to understanding Jansen's Disease and improving outcomes for affected individuals and families.
Because Jansen's Disease is extremely rare, progress depends on coordinated scientific investigation, long-term data collection, and collaboration across clinical and research institutions.
Why Research Matters
Limited clinical experience and fragmented data can delay diagnosis, complicate care, and slow the development of effective treatments for rare conditions.
Research helps establish a clearer understanding of disease progression, identify potential therapeutic strategies, and ensure that future clinical trials are grounded in reliable evidence.
Active Research Areas
Treatment Breakthroughs
Research focused on potential therapies, including preclinical models, molecular mechanisms, and translational drug development.
Natural History Study
Long-term observational research designed to understand how Jansen's Disease progresses over time and varies between individuals.
PCORI Award
Patient-centered outcomes research supported through a dedicated award from the Patient-Centered Outcomes Research Institute.
Publications & Knowledge Sharing
Peer-reviewed publications are a key way that research findings are shared with clinicians, researchers, and the broader scientific community.