Long-term clinic tracking of ALS patients
Clinic-based Multicenter ALS Natural History Data Collection
This project gathers clinic visits, symptom scores, and blood biomarker data from people with ALS to map how the disease changes over time.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Minnesota NIH-funded |
| Lab location | 1 site (Minneapolis, United States) |
| Project ID | NIH-11381559 on NIH RePORTER |
What this research studies
If you come to one of the participating ALS multidisciplinary clinics, your routine clinic information will be entered into a shared, de-identified database. The team combines data from over 1,700 patients across nine centers and records baseline details, blood levels of neurofilament light (NfL), and regular measures such as ALSFRS-R, breathing tests, and speaking rate. Enrollment is offered to all clinic patients and data are collected prospectively during normal care visits. Researchers and industry partners will use the dataset to improve clinical trial planning and to monitor treatments after approval.
Who could benefit from this research
Good fit: Ideal candidates are people diagnosed with ALS who attend one of the participating multidisciplinary clinics and are willing to have routine clinical measures and a blood sample included.
Not a fit: People who do not receive care at participating clinics or who do not want their clinic data or blood samples included are unlikely to benefit directly from participation.
Why it matters
Potential benefit: If successful, the project could help design better ALS clinical trials and speed development of more effective treatments.
How similar studies have performed: Similar ALS registries and clinic-based cohorts have been valuable for research, but this combined, longitudinal dataset is larger and more clinically detailed than many prior efforts.
Where this research is happening
Minneapolis, United States
- University of Minnesota — Minneapolis, United States (Active)
Researchers
- Principal investigator: Walk, David — University of Minnesota
- Study coordinator: Walk, David
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 below.