The Huntington’s Disease Integrated Staging System
Jeffrey M Long, Huntington’s Disease Regulatory Science Consortium (HD‐RSC) Work Group · 2025
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Description
Jeffrey Long and a consortium work group present a staging system that covers Huntington's disease from birth to late decline, in a 2025 paper. The disease stems from a repeated stretch in one gene, and trials need a shared way to sort patients by stage. The group, drawn from industry and universities, weighed markers, signs, and data from past studies. They set cutoffs for each stage from healthy control data and tested the scheme for soundness.
Stage zero holds gene carriers with no sign of disease. Stage one begins when biology shifts can be measured, stage two when a clear clinical picture appears, and stage three when daily function declines. The system drops older labels such as premanifest and prodromal. Trial designers can enroll patients across the whole course, including before motor diagnosis. The authors propose that all new studies use this frame.
Catalog record
| CREATOR | Jeffrey M Long, Huntington’s Disease Regulatory Science Consortium (HD‐RSC) Work Group |
|---|---|
| YEAR | 2025 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 2 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |