RecruitingAmyotrophic Lateral Sclerosis

ASSESS ALL ALS Study

Eligible age

18+ yrs

Accepts

All genders

Locations

27 states

Healthy volunteers

Yes

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About this study

The ALL ALS Clinical Research Consortium is establishing research to collect a wide range of samples, clinical information and measurements from Amyotrophic Lateral Sclerosis (ALS) symptomatic, ALS gene carriers and control cohorts. This consortium is being funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS) and managed by two clinical coordinating centers (CCC) at Barrow Neurological Institute and Massachusetts General Hospital. The clinical sites are distributed across the country, and led by a group of collaborative principal investigators. Once data and samples are collected and harmonized, it will be made available to research community for future research into ALS and related neurological diseases. ASSESS protocol is specific for symptomatic ALS and control participants. This protocol includes both on-site and off-site(remote) participants. The participants will be followed for 24 months (2 years), and will include collection of medical history, clinical outcomes, and blood samples once in 4 months. Additionally, the participants will complete patient reported outcomes and speech recordings once a month. Participants who are coming into clinic may also provide optional Cerebrospinal Fluid (CSF) samples.

Sponsor: St. Joseph's Hospital and Medical Center, Phoenix

You may qualify if…

✓ 1. Age 18 years or older
✓ 2. Capable of providing informed consent
✓ 3. Willing to follow study procedures
✓ 4. Diagnosis of ALS by a physician
✓ 5. Access to a smartphone, computer or tablet, and internet (need not be in the home - access to a public library or other available computer with internet connection is sufficient)
✓ 1. Age 18 years or older
✓ 2. Capable of providing informed consent
✓ 3. Willing to follow study procedures

You may not qualify if…

✕ 1. Significant cognitive impairment, clinical dementia, or unstable psychiatric illness, including psychosis, active suicidal ideation, suicide attempt, or untreated major depression \<= 90 days of screening, that would interfere with the study procedure, according to Investigator's judgement.
✕ 2. Clinically significant unstable medical condition (other than ALS) (e.g., cardiovascular instability, systemic infection, untreated thyroid dysfunction, malignant and potentially progressive cancer) that would render the participant unlikely to be able to complete 12 months of follow-up, according to Investigator's judgment.
✕ 1. Medically unable to undergo lumbar puncture (LP) as determined by the site investigator (i.e., bleeding disorder, a skin infection at or near the LP site, known or suspected intracranial or intraspinal tumor or other cause of increased intracranial pressure).
✕ 2. Allergy to Lidocaine or other local anesthetic agents.
✕ 3. Use of anticoagulant medication or antiplatelet medications (aside from aspirin 81 mg) that cannot be safely withheld prior to lumbar puncture.
✕ 4. Blood dyscrasia, abnormal bleeding diathesis, or the use of dialysis for renal failure.
✕ 5. Current pregnancy based on participant self-report
✕ 6. Clinical judgement of the site investigator that the participant would be unable to undergo multiple lumbar punctures.