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:
Recruiting
Disease:
Amyotrophic Lateral Sclerosis
Study Type:
Observational [Patient Registry]
Type of Intervention:
N/A
Intervention Name:
N/A
Placebo:
N/A
Phase:
N/A
Study Chair(s)/Principal Investigator(s):
Jeffrey Loeb, MD, University of Illinois at Chicago
Clinicaltrials.gov ID:
Neals Affiliated?
No
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.
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:
40
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 neals.org:
10 / 05 / 2021
Minimum Age:
18 Years
Maximum Age:
90 Years
Can participants use Riluzole?
Yes
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