Analysis of Human ALS Tissues and Registry of ALS Patients

Study Purpose:

Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig's Disease, is a progressive, terminal condition of muscle weakness that is associated with degeneration of neurons in the spinal cord and brain. This devastating disorder afflicts people in the prime of their lives. At the present time, there are no cures for this disorder, and current treatments are marginal at best. Despite years of intensive research, a fundamental understanding of this disease is still lacking. There is a need to identify both reliable markers of disease progression and effective treatments. The goal of this research is to bring a greater understanding of ALS patients closer to the research studies that can lead to new hypotheses and approaches.

Study Status:



Amyotrophic Lateral Sclerosis

Study Type:

Observational [Patient Registry]

Type of Intervention:


Intervention Name:






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

Jeffrey Loeb, MD, University of Illinois at Chicago ID:


Neals Affiliated?


Coordinating Center Contact Information

University of Illinois at Chicago

Samreen Ahmed / email hidden; JavaScript is required / 312-413-1882

Chicago, Illinois, 60612 United States

Full Study Summary:

Patients will be approached during in-person or phone/online appointments and asked their consent to enter information and results from their physical examinations, electrodiagnostic testing, and other testing done as a standard of care and into a database to monitor disease progression and use them for research purposes. Also, the patients will be asked for consent to undergo a MRI scan.

In a second informed consent form, patients will be enrolled to perform a rapid postmortem autopsy and have the tissue banked for research purposes. It is important to keep the consents separate because some patients may not consent to this postmortem study, but would consent to the premortem studies.

The information gained from the premortem studies will be used during the postmortem examination to select tissue for further processing. Tissue from different regions, including brain, spinal cord, nerve and muscle will be processed in parallel for cellular and molecular analyses that include histology, immunostaining, in situ hybridization, protein, RNA, and small molecule analyses.

Study Sponsor:

University of Illinois at Chicago

Estimated Enrollment:


Estimated Study Start Date:

09 / 01 / 2020

Estimated Study Completion Date:

08 / 30 / 2025

Posting Last Modified Date:

11 / 04 / 2022

Date Study Added to

10 / 05 / 2021

Minimum Age:

18 Years

Maximum Age:

90 Years

Can participants use Riluzole?


Inclusion Criteria:

- Patients over the age of 18

- Established diagnosis of ALS

- Able and willing to give written informed consent and must authorize release and use of protected health information

Exclusion Criteria:

- Patients below the age of 18

- No diagnosis of ALS

University of Illinois at Chicago | Recruiting

Samreen Ahmed / 312-413-1882 / email hidden; JavaScript is required

Sub-Investigator : Charles Abrams, MD, PhD

Chicago, Illinois 60612
United States

Sub-Investigator : Diana Mnatsakanova, MD

Sub-Investigator : Pritikanta Paul, MD