The Precision Medicine Program

The Precision Medicine Program

Quick Info:

Status:
Currently Recruiting
Estimated Enrollment:
450
Phase:
N/A
Treatment Type:
Trial Type:
Find Treatments for ALS
Sponsor:
ALS Therapy Development Institute
Primary Investigator:
Contact Information:

Enrollment Criteria:

Forced Ventilation

Breathing Ability

Percent lung function (FVC) or (SVC)
No Limit
Months/Onset

Months Since Onset

Number of months since first
symptoms of ALS
No Limit
BiPap Allowed

Non-Invasive Ventilation (NIV)

Can PALS use a BiPAP in the trial?
Yes
DPS Allowed

Diaphragm Pacer (DPS)

Can PALS use a DPS in the trial?
Yes
Edaravone Usage

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.

Locations:

Other Information:

Purpose: The Precision Medicine Program (PMP) at the ALS Therapy Development Institute is the world's premier partnership between scientists and people with ALS to identify treatments and cures. This pioneering partnership has resulted in the creation of the largest, patient-linked database integrating ALS genetics, voice recordings, lifestyle, demographics and accelerometer data. As a result of this, this trial may lead to the identification of new surrogate endpoints for ALS clinical trials - making them small and faster - as well as finding potential treatments for the various subtypes of ALS.
Eligibility: 1) ALS diagnosis - possible, probable, suspected, definite 2) Access to the internet and 3) the ability to consent.
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:
ALS Forum:
First Published on Clinicaltrials.gov: 7/14/2014
ClinicalTrials.gov ID:
Trial Protocol as Published on Clinicaltrials.gov:
ClinicalTrials.gov