Natural history study of rare polyamine disorders in children and adults
Official title: Natural History Study
Funded at Henry Ford Health + Michigan State University Health Sciences · NIH-11453335 · Data updated 2026-11-12
A patient-friendly study is tracking how polyaminopathies progress over time to better understand their health and daily challenges.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Henry Ford Health + Michigan State University Health Sciences NIH-funded |
| Lab location | 1 site (East Lansing, United States) |
| Project start | September 8, 2026 |
| Project end | June 30, 2031 |
| Funding year | 2026 |
| Award (this year) | $226,442 |
| NIH project number | 1U54HD122910-01 |
| Project ID | NIH-11453335 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants include individuals across 0-21 years and adults with known polyaminopathy conditions (SRS, BABS, DHPS/DOHH deficiencies, FABAS) who can share medical histories and may contribute biosamples.
✕Less likely to help
Participants without a confirmed polyaminopathy or unable to participate in long-term follow-up may receive limited direct benefit.
What this research studies
This project follows people with rare metabolic disorders that affect polyamine levels, collecting medical information over several years. It aims to map symptoms, complications, and outcomes to guide future treatments. The study is centered at CPD in collaboration with Henry Ford Health and Michigan State University to build a comprehensive picture of disease progression across ages.
Why it matters
Potential benefit: If successful, the study could inform earlier care, improve quality of life, and accelerate development of targeted therapies for polyaminopathies.
How similar studies have gone: Previous centers have begun to characterize polyaminopathies, and a natural history approach is a logical next step to guide therapy development.
Where this research is happening
-
Henry Ford Health + Michigan State University Health Sciences
East Lansing, United States Active
Researchers
- Principal investigator: Bupp, Caleb — Henry Ford Health + Michigan State University Health Sciences
- Study coordinator: Bupp, Caleb
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.