Collects clinical data and blood samples from people with ALS and their families
Gathers blood samples and health data from people with ALS and their relatives for research.
Plain-language title generated from the registry record
Registry title: Studies in Amyotrophic Lateral Sclerosis (ALS) and Other Neurodegenerative Motor Neuron Disorders
Key facts
- Where
- Jacksonville, United StatesSee the site
Where in United States
- Mayo Clinic FloridaJacksonville, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Mayo Clinic
- Trial code
- NCT05474235
- Record updated
- 27 August 2026
- Original description
The purpose of this study is to collect, from patients with sporadic and familial ALS and their family members, clinical data and blood samples for extraction of DNA, RNA, preparation of lymphocytes, plasma and serum to establish a repository for future investigations of genetic contributions to ALS pathogenesis. Blood samples for DNA extraction also would be collected from control subjects with no personal or family history of ALS phenotypes.Read full original descriptionShow less
Clinical & Genetic Studies in ALS and Other Neurodegenerative Motor Neuron Disorders
The purpose of this study is to collect, from patients with sporadic and familial ALS and their family members, clinical data and blood samples for extraction of DNA, RNA, preparation of lymphocytes, plasma and serum to establish a repository for future investigations of genetic contributions to ALS pathogenesis. Blood samples for DNA extraction also would be collected from control subjects with no personal or family history of ALS phenotypes.
Inclusion: ALS or Suspected ALS Patient; 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 neurodegenerative disorder with evidence of ALS plus extramotor features; OR; Blood relative (first, second or third degree) with history of ALS or neurodegenerative disorder with evidence of ALS plus extramotor features; OR:; A clinical suspicion or referral for ALS; > 18 years of age; Willing and able to give signed informed consent or assent that has been approved by the Institutional Review Board (IRB); Blood Relative of ALS Patient; Family history (first, second or third degree blood relative) of ALS or other motor neuron disease; > 18 years of age; Willing and able to give signed informed consent that has been approved by the Institutional Review Board (IRB); Healthy Control; No personal or family history (first, second or third degree blood relative) of ALS or other motor neuron disease; > 18 years of age; No personal history of other neurodegenerative disease (i.e., Alzheimer disease, Parkinson disease); Willing and able to give signed informed consent that has been approved by the Institutional Review Board (IRB).
Exclusion: Personal or family history of dementia or other neurodegenerative disease (Parkinson disease, Alzheimer disease, etc.); ALS or Suspected Patient • Limited mental capacity rendering the subject unable to provide written informed consent or assent or comply with standard phlebotomy procedures; Blood Relative of ALS Patient; Limited mental capacity rendering the subject unable to provide written informed consent or comply with standard phlebotomy procedures; Healthy Control Subject; Limited mental capacity rendering the subject unable to provide written informed consent or comply with standard phlebotomy procedures.