Observational {{label}}

DNA, Blood and Skin Cell Repository for Research on ALS and Related Neurodegenerative Disorders at Mayo Clinic Florida


Overview

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Approved by FDA
Approved outside USA
Is a supplement

Details

Enrollment Criteria

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This study is intended to obtain clinical information and establish a repository of DNA, RNA, peripheral blood monocyte, lymphocyte and skin tissue samples from people with ALS and related neurodegenerative motor neuron diseases, people with a family history of these conditions, and healthy people with no family history of these disorders. The samples will be used in future research to learn about how these disorders affect people, what causes these conditions, and how the investigators can tell when someone has this kind of disease. Future research may also include the generation of stem cells from stored blood cell and skin cell samples. Participants will not be paid for taking part in this study.

Inclusion Criteria:
- ALS Patient
1. 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
2. > or = 18 years of age and willing to provide consent, or assent, if unable to
consent
- Subject with family history of ALS or other relevant neurodegenerative disease
1. No personal history of ALS, ALS-FTD or other motor neuron disease
2. Family history of ALS, ALS-FTD in a first, second or third degree blood relative
3. > or = 18 years of age and willing to provide consent
- Control
1. No personal or family history (first or second degree blood relative) of ALS,
dementia, Parkinson disease or other relevant neurodegenerative disorder
2. > or = 18 years of age and willing to provide consent
Exclusion Criteria:
- ALS Subject and subject with family history of ALS/ALS-FTD or other neurodegenerative
motor neuron disorder but no personal history of such conditions
1. History of medical disorder that leaves in question whether neurological signs
and symptoms potentially related to a neurodegenerative disease may be
contributed to by an acquired condition
2. Limited mental capacity rendering the subject unable to comply with skin punch
biopsy or standard phlebotomy procedures
3. For collection of skin punch biopsy, an increased risk of bleeding complications
or allergy to local anesthetic administered at the time of skin biopsy
- Healthy Control Subject
1. Personal or family history of dementia or other neurodegenerative disease
(Parkinson disease, Alzheimer disease, etc.)
2. Limited mental capacity rendering the subject unable to provide written informed
consent or comply with standard phlebotomy procedures
3. For collection of skin punch biopsy, an increased risk of bleeding complications
or allergy to local anesthetic administered at the time of skin biopsy

Locations
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Join the ALS Research Collaborative (ARC) Study Today!
Ready to make a difference in ALS research?
Join the ARC Study! Whether you're living with ALS or an asymptomatic gene carrier, your participation can help inform ALS research and lead to new treatments.
ALS Research Collaborative
Thank You to Our Sponsors
Mitsubishi Tanabe Pharma