Creating a comprehensive database for ALS patients in Seattle
Curation of the Seattle ALS Patient
This study is all about gathering and sharing important information from ALS patients and their families to help everyone understand the disease better and support future research that can benefit the ALS community.
Quick facts
| Grant type | R03 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Oregon State University NIH-funded |
| Lab location | 1 site (Corvallis, United States) |
| Project ID | NIH-11046340 on NIH RePORTER |
What this research studies
This research focuses on organizing and sharing valuable data collected from ALS patients and their partners over several years. The Seattle ALS Patient Profile Database contains detailed information about the psychological and physical experiences of ALS patients, which can help in understanding the disease better. By formatting and validating this data, the research aims to make it accessible for future studies and applications, ultimately benefiting the ALS community. The project emphasizes the importance of data sharing for rare diseases like ALS, ensuring that the contributions of patients and their families are honored.
Who could benefit from this research
Good fit: Ideal candidates for this research are ALS patients and their caregivers who have participated in the Seattle ALS Patient Profile Database.
Not a fit: Patients with conditions other than ALS or those not involved in the Seattle ALS Patient Profile Database may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could enhance the understanding of ALS and improve future treatment strategies for patients.
How similar studies have performed: Previous research has shown that data sharing and analysis of longitudinal datasets can lead to significant advancements in understanding rare diseases like ALS.
Where this research is happening
Corvallis, United States
- Oregon State University — Corvallis, United States (Active)
Researchers
- Principal investigator: Segerstrom, Suzanne C. — Oregon State University
- Study coordinator: Segerstrom, Suzanne C.
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.