Biospecimen Biorepository for ALS and Similar Neurodegenerative Disorders

This study is collecting blood and cerebrospinal fluid (CSF) samples from people with Amyotrophic Lateral Sclerosis (ALS), ALS-Frontotemporal Dementia (ALS-FTD), and similar neurodegenerative disorders. The goal is to build a collection of these samples that can be used in future research to find biomarkers. Biomarkers are non-genetic elements in your body that could help doctors diagnose and monitor ALS more easily. You may be able to join if you are 18 years or older and have a clinical diagnosis of ALS or a similar neurodegenerative disorder. The study aims to collect samples for 10 years to see if potential biomarkers change over time. The current recruitment status is unclear.

Study design
This is an observational study that plans to enroll 100 participants. It is not testing a specific intervention or drug.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Blood serum, blood plasma, and cerebrospinal fluid will be collected for 10 years.

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NCT05116943

Biospecimen Biorepository for the Study of ALS, ALS-FTD and Similar Neurodegenerative Disorders

Recruiting
Not specifiedAges 18+Observational
Mayo Clinic
~100 participants
Updated 2025-12-16 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Blood serum collection
Measured over 10 years
+2 more outcomes measured
Amyotrophic Lateral Sclerosis
1 sites across 1 states
Florida1
  • Bjorn Oskarsson, MD · PRINCIPAL_INVESTIGATOR · Mayo Clinic

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Eligibility criteria

Inclusion

Clinical diagnosis of possible, laboratory-supported probable, probable or definite ALS according to modified eL Escorial criteria, suspected ALS according to original el Escorial criteria, or diagnosis of a similar neurodegenerative disorder.
Willing to provide consent, or assent, if physically unable to consent owing to disease-related muscle weakness.
No personal history of ALS, ALS-FTD or other motor neuron disease.
Subjects with family history of ALS, ALS-FTD the affected family member needs to be a first, second, or third degree blood relative.
Willing to provide consent.

Exclusion

History of medical disorder that leaves in question whether neurological signs and symptoms potentially related to a neurodegenerative disease may be caused by another unrelated disorder.
Limited mental capacity rendering the subject unable to comply with lumbar puncture or standard phlebotomy procedures.
For lumbar puncture, an increased risk of bleeding complications or allergy to local anesthetic administered or skin antiseptic used for lumbar puncture.
Limited mental capacity rendering the subject unable to comply with lumbar puncture or standard phlebotomy procedures.
For lumbar puncture, an increased risk of bleeding complications or allergy to local anesthetic administered or skin antiseptic used for lumbar puncture.
  • Blood serum collection10 years

    Total number of blood serum samples collected

  • Blood plasma collection10 years

    Total number of blood plasma samples collected

  • Cerebrospinal fluid collection10 years

    Total number of cerebrospinal fluid samples collected