ALS Sample Repository

Study Purpose:

The purpose of this study is to acquire biofluid samples from a diverse cohort of participants to create a living library for researchers across the world to learn more about the biomarkers of the ALS disease state.


Amyotrophic Lateral Sclerosis (ALS), Primary Lateral Sclerosis (PLS), Hereditary Spastic Paraplegia (HSP), Healthy Volunteer, Healthy Volunteer with a Family History of ALS

Study Type:

Observational Study

Study Category:


Study Status:



Not Applicable

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

James D. Berry, MD, MPH (Massachusetts General Hospital) ID (11 digit #):

Neals Affiliated?


Coordinating Center Contact Information

Massachusetts General Hospital
Alison Clark / .(JavaScript must be enabled to view this email address) / (617) 726-4284
.(JavaScript must be enabled to view this email address) 165 Cambridge Street
Suite 600
Boston, Massachusetts 02214 United States

Full Study Summary:

We are developing a diverse living library of biofluid samples (blood, spinal fluid, urine) from people of different ages, ethnicities, and sexes, from healthy volunteers, people with amyotrophic lateral sclerosis (ALS), and motor neuron disease (MND), as well as other neurological diseases that may mimic motor neuron diseases. The samples collected will be stored and used for ALS research conducted globally to answer questions related to cause, prevention, treatment, and hereditability of ALS. Participants must be at least 20 years of age and be able to answer brief questions about their medical and family history, as well as be willing to have blood and/or CSF drawn for the study.

Study Sponsor:

Project ALS, Winthrop Family Scholar in ALS Research and Clinical Care

Participant Duration:

Participants will visit 165 Cambridge St. in Boston, MA 1 to 5 times over the course of two years. Only one visit is required, and additional visits are completely optional. Each visit lasts about 2 hours.

Estimated Enrollment:


Estimated Study Start Date:


Estimated Study Completion Date:

Posting Last Modified Date:


Date Study Added to

  • More Information

    Parking will be compensated for participants. $10 will be compensated for a blood draw and $100 for a lumbar puncture.

  • Eligibility Criteria


    Female, Male

    Minimum Age:


    Maximum Age:


    Time since Symptom Onset:


    Time since Diagnosis:


    Can participants use Riluzole?


  • Site Contact Information

    Massachusetts General Hospital
    Alison Clark / .(JavaScript must be enabled to view this email address) / (617) 726-4284
    165 Cambridge Street
    Boston, Massachusetts 02114
    United States