ALS/MND Natural History Study Data Repository
This is an observational study collecting information from people with Amyotrophic Lateral Sclerosis (ALS) and other motor neuron disorders (MNDs) like Primary Lateral Sclerosis (PLS) or Kennedy Disease. The study is building a data repository to better understand how these conditions progress over time. You would be eligible to participate if you are between 18 and 90 years old and have a diagnosis of ALS or another motor neuron disorder. The study will track your symptoms and how your disease changes over time using tools like the ALS Functional Rating Scale-Revised (ALSFRS-R) and by measuring your breathing capacity (Slow Vital Capacity or SVC). This information will be collected every 3-4 months for up to 5 years.
- Study design
- This is an observational study collecting data from up to 5000 participants with ALS or other motor neuron disorders.
- What's involved
- You would have information collected at each routine clinic visit, including demographics, disease history, and specific measures of your condition every 3-4 months for up to 5 years.
- Compensation
- Not stated in the trial record.
- Follow-up
- Your survival and disease progression will be tracked every 3-4 months for up to 5 years.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
ALS/MND Natural History Study Data Repository
At a glance
Conditions
Where it's being run
18 sites across 12 statesStudy leadership
- Alexander Sherman · PRINCIPAL_INVESTIGATOR · Massachusetts General Hospital
Who to contact
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Do you actually qualify for this trial?
Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.
Inclusion
Exclusion
What this trial measures
- ALS Functional Rating Scale-Revised (ALSFRS-R)Every 3-4 months up to 5 years
The ALS Functional Rating Scale revised is a 12-item rating scale that measures the progression of disability in patients with ALS. The ALSFRS-r assesses patients' levels of self-sufficiency in areas of feeding, grooming, ambulation and communication. The higher the score, the earlier in the disease progression. It consists of 12 questions with a maximum score of 48 points.
- Slow Vital Capacity (SVC)Every 3-4 months up to 5 years
Slow vital capacity test normalized to age, sex, and height
- SurvivalEvery 3-4 months up to 5 years
Patient survival or survival equivalent (time to ventilator or feeding tube). Survival equivalent is assessed during routine clinical visits, while mortality event may be reported when becomes known to the treating clinician..