ALS Sample Repository (Living Library)

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.

Study Status:



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

Study Type:


Type of Intervention:


Intervention Name:






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

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

Neals Affiliated?


Coordinating Center Contact Information

Massachusetts General Hospital

Alison Clark / email hidden; JavaScript is required / (617) 726-4284

165 Cambridge Street
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:

07 / 14 / 2006

Posting Last Modified Date:

12 / 01 / 2021

Date Study Added to

10 / 08 / 2021

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

Accepts healthy volunteers:


Minimum Age:


Can participants use Riluzole?


Massachusetts General Hospital

Ethan Riddell / 617-643-4803 / email hidden; JavaScript is required

Chrysthie Moline / 617-643-2499 / email hidden; JavaScript is required

Boston, Massachusetts 02114
United States