A Single or Multiple Visit Protocol for Collection of DNA/RNA/Serum/Plasma/CSF in Amyotrophic Lateral Sclerosis and related disorders

Study Purpose:

The purpose of this study is to collect DNA, RNA, Serum, Plasma and CSF samples from donors with ALS that will be utilized to delineate vulnerability markers for the disease, enhance the understanding of treatment response and side effects and develop new targets for future drug development.

Study Status:



Amyotrophic Lateral Sclerosis (ALS) , Familial ALS , Sporadic ALS

Study Type:


Type of Intervention:


Intervention Name:






Study Chair(s)/Principal Investigator(s):

John Flax, MD (PrecisionMed)

Clinicaltrials.gov ID:

Neals Affiliated?


Coordinating Center Contact Information


Anna Kaur / email hidden; JavaScript is required / 619-797-6851

132 N Acacia Ave #1104
Solana Beach, California, 91942 United States

Full Study Summary:

This is a single or multiple visit study to evaluate clinical severity and collect DNA/RNA/SERUM/ PLASMA/CSF from donors with amyotrophic lateral sclerosis (ALS) and related disorders. Donors will have diagnostic as well as severity evaluating clinical rating scales. Donors who elect to return for additional visits will be seen every 4 months. Study visits consist of administration of rating scales, clinical data and blood + CSF collection.

Study Sponsor:


Participant Duration:

At least 1 visit, but allowed to return for follow up visits if patient so chooses. Visits are conducted at treating physician’s clinic as a normal standard of care visit.

Estimated Enrollment:


Estimated Study Completion Date:

01 / 01 / 2025

Posting Last Modified Date:

04 / 15 / 2021

Date Study Added to neals.org:

04 / 15 / 2021

Minimum Age:


Can participants use Riluzole?


Sharlin Health Neuroscience

Shawna Tindall / email hidden; JavaScript is required

Ozark, Missouri 65721
United States

Providence Brain and Spine Insititute

Ashley Adamo / email hidden; JavaScript is required

Portland, Oregon 97231
United States

Austin Neuromuscular Center

Luisa Sansalone / email hidden; JavaScript is required

Leti Camacho / email hidden; JavaScript is required

Leti Camacho

Austin, Texas 78756
United States

Nerve and Muscle Center of Texas

Dr. Aziz Shaibani / email hidden; JavaScript is required

Chantae Oates / email hidden; JavaScript is required

Chantae Oates

Houston, Texas 77030
United States