Phenotype, Genotype & Biomarkers in ALS and Related Disorders



Status:Recruiting
Conditions:Neurology, Neurology, Neurology, Neurology, Neurology, Neurology, Neurology
Therapuetic Areas:Neurology
Healthy:No
Age Range:Any
Updated:1/11/2019
Start Date:April 2015
End Date:August 2019
Contact:Michael Benatar, MBChB, MS, DPhil
Phone:305-243-4015

Use our guide to learn which trials are right for you!

The goals of this study are: (1) to better understand the relationship between the phenotype
and genotype of amyotrophic lateral sclerosis (ALS) and related diseases, including primary
lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), progressive muscular atrophy
(PMA), and frontotemporal dementia (FTD); and (2) to develop biomarkers that might be useful
in aiding therapy development for this group of disorders.

This study will recruit patients with ALS, ALS-FTD, PLS, HSP, and PMA, with a focus on
incident cases. Patients with both familial and sporadic forms of these diseases will be
enrolled and followed longitudinally using a standardized set of evaluations. Biological
samples (blood, urine, CSF) will be collected from all study participants, and will be used
for biomarker discovery and validation. Family members of affected individuals may also be
enrolled and asked to contribute DNA and biological samples to aid genetic and biomarker
discovery.

Inclusion Criteria:

- Member of at least one of the following categories:

1. Individuals with a clinical diagnosis of ALS or a related disorder, including
FTD, HSP, PLS, PMA and MSP (sporadic or familial).

2. Family member of an enrolled affected individual.

- Able and willing to comply with relevant procedures.

Exclusion Criteria:

- Affected with end or late stage disease.

- A condition or situation which, in the PI's opinion, could confound the study finding
or may interfere significantly with the individual's participation and compliance with
the study protocol. This includes (but is not limited to) neurological, psychological
and/or medical conditions.
We found this trial at
14
sites
333 North Washington Avenue
Minneapolis, Minnesota 55415
Principal Investigator: Samuel Maiser, MD
Phone: 612-873-5462
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9500 Euclid Avenue
Cleveland, Ohio 44106
216.444.2200
Principal Investigator: Erik Pioro, MD
Phone: 216-445-3353
Cleveland Clinic Cleveland Clinic is committed to principles as presented in the United Nations Global...
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Cleveland, OH
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101 Jessup Hall
Iowa City, Iowa 52242
(319) 335-3500
Principal Investigator: Andrea Swenson, MD
Phone: 319-356-8744
University of Iowa With just over 30,000 students, the University of Iowa is one of...
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Miami, Florida 33124
(305) 284-2211
Principal Investigator: Michael Benatar, MBChB, MS, DPhil
Phone: 1-844-837-1031
University of Miami A private research university with more than 15,000 students from around the...
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Miami, FL
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Charlottesville, Virginia 22908
Principal Investigator: Ted Burns, MD
Phone: 434-982-0293
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Dallas, Texas 75390
Principal Investigator: Jaya Trivedi, MD
Phone: 214-648-0214
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Dallas, TX
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Kansas City, Kansas 66160
Principal Investigator: Richard Barohn, MD
Phone: 913-945-9934
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Palo Alto, California 94304
Principal Investigator: Yuen So, MD
Phone: 650-497-3080
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Palo Alto, CA
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3451 Walnut St
Philadelphia, Pennsylvania 19104
1 (215) 898-5000
Principal Investigator: Corey McMillan, Ph.D
Phone: 215-349-5695
Univ of Pennsylvania Penn has a long and proud tradition of intellectual rigor and pursuit...
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San Antonio, Texas 78229
Principal Investigator: Carlayne Jackson, MD
Phone: 210-450-0524
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San Diego, California 92103
Principal Investigator: John Ravits, MD
Phone: 858-246-2325
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San Francisco, California 94115
Principal Investigator: Jonathan Katz, MD
Phone: 415-600-1368
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San Francisco, CA
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Tübingen,
Principal Investigator: Rebecca Schule, MD
Phone: 07071/29-85653
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Tübingen,
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Winston-Salem, North Carolina 27157
Principal Investigator: James Caress, MD
Phone: 336-713-8577
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