Quick Info
Status
Currently Recruiting
Estimated Enrollment
750
Phase
N/A
Treatment Type
Trial Type
Translational research study
Primary Investigator
Steve Perrin, Ph.D.
Contact Information
Locations
Enrollment Criteria
Breathing Ability
Percent lung function (FVC) or (SVC)
No Limit
Months Since Onset
Number of months since first symptoms of ALS.
No Limit
Non-Invasive Ventilation (NIV)
Can PALS use a BiPAP in the trial?
Yes
Diaphragm Pacer (DPS)
Can PALS use a DPS in the trial?
Yes
Edaravone Usage
Can a PALS use edaravone (Radicut/Radicava) while enrolled in the trial?
Unknown
Update Notes
There are no update notes for this clinical trial.

Other Information

Purpose
The ALS Therapy Development Institute’s Precision Medicine Program (PMP) is the most comprehensive and longest running translational research study in ALS. Our researchers partner with people living with ALS around the world to share and gather data on medical histories, family histories, genetics, biomarkers, and patient cell biology to better understand the disease. Our goals are to • Discovering new targeted treatments for ALS. • Making clinical trials faster and more efficient. • Empowering people with ALS by giving them access to their own data. Only by working in true partnership with people with ALS can we expand our comprehensive database and enhance our knowledge of this disease.
Eligibility
1) ALS diagnosis - possible, probable, suspected, definite 2) Access to the internet 3) the ability to consent 4) ability to communicate in English
Details
Everyone with an ALS diagnosis can sign-up and provide their data to the PMP. All data collection is done online, no travel. Participants have access to a secure portal to enter their data and review it as well as PMP progress online. Those that meet additional criteria may be asked to participate in additional arms of the PMP.
Collaborator(s)
News Articles and Summaries
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ALS Forum
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Trial Protocol as Published on Clinicaltrials.gov
(First Published: 7/14/2014)