Collecting clinic-based ALS care and progression data
Clinic-based Multicenter ALS Natural History Data Collection
This project gathers long-term clinical information and blood biomarker measurements from people living with ALS who are seen at multidisciplinary clinics.
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-11425723 on NIH RePORTER |
What this research studies
As a patient, you would be invited to join when you visit one of the participating multidisciplinary ALS clinics, and your de-identified clinic records would be included in a combined database. The project has already pooled data from over 1,700 patients across nine clinics and will continue collecting prospective information. Researchers will record baseline characteristics, take blood samples for neurofilament light (NfL), and track validated measures over time such as ALSFRS-R, disease stage, breathing capacity, and speaking rate. The pooled dataset will be used in partnership with industry and the ALS community to inform clinical trial design and post-marketing monitoring.
Who could benefit from this research
Good fit: Ideal participants are people diagnosed with ALS who receive care at one of the participating multidisciplinary ALS clinics and are willing to share clinical data and blood samples.
Not a fit: People who are not seen at participating clinics, do not have ALS, or are unwilling to share their clinical information or provide blood samples may not be eligible or directly benefit.
Why it matters
Potential benefit: If successful, this work could help design better trials, identify useful biomarkers like NfL, and improve how treatments and progression are monitored for people with ALS.
How similar studies have performed: Other ALS registries and clinic-based natural history datasets have supported trial planning and biomarker research, and this project expands on those efforts with larger, deeper, and longer-term data.
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.