Genomic Translation for Amyotrophic Lateral Sclerosis Care



Status:Recruiting
Conditions:Neurology, Neurology, ALS
Therapuetic Areas:Neurology, Other
Healthy:No
Age Range:18 - 80
Updated:3/15/2019
Start Date:June 8, 2016
End Date:November 2020
Contact:ALS Center Research Coordinator
Email:alscenter@columbia.edu
Phone:212-305-2202

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

The purpose of this study is to look for abnormal genes and gene expression profiles that
help determine why a person develops amyotrophic lateral sclerosis (ALS) and related motor
neuron diseases (MND) and why their symptoms present and progress with a particular pattern.

In all patients, ALS/MND is caused by the progressive death of motor neurons. However, every
patient is affected differently. Some develop symptoms in their 80's while others get sick in
adolescence. Swallowing/speech are affected first in some patients, but most have weakness in
their hands or feet at onset. Some individuals show very rapid progression, even as others
live for decades. Finally, some patients have loss of mainly motor neurons in the brain (as
in primary lateral sclerosis), while others lose mainly lower motor neurons in the spinal
cord and brain stem (as in progressive muscular atrophy). Research has uncovered a few
genetic factors that contribute to the variability of ALS/MND. For example, mutations in the
superoxide dismutase 1 (SOD1) gene makes onset in the legs more likely and decreases the
chance of developing dementia. Conversely, having a mutated C9ORF72 gene makes dementia much
more likely. Uncovering additional factors causing ALS variability is an important research
priority and is likely to provide clues about how to better diagnose and treat the disease.

This study is called "Genomic Translation for ALS Care" (GTAC). The investigators will
analyze the genome and gene expression patterns of people with ALS/MND and carry out research
on that data, finding insights that the investigators hope will translate into better care
for ALS/MND patients.

Inclusion Criteria:

Study participants meeting all of the following criteria will be eligible for enrollment in
GTAC:

1. Men or women of any race or ethnicity aged 18 or older

2. Diagnosis of familial or sporadic ALS (definite, probable, or possible according to El
Escorial Criteria, Appendix 1), or those with primary lateral sclerosis or progressive
bulbar/muscular atrophy forms of motor neuron disease. All-comers with ALS/MND should
be enrolled without regard to familial vs sporadic or gene mutation status (i.e.
participants with known gene mutations should still be enrolled), or phenotype.

3. Capable of providing informed consent and following study procedures (in the case that
a subject lacks the ability to provide informed consent, informed consent will be
sought from the subject's surrogate representative).

4. Willing to return to clinic site (or another participating center) for follow-up care.

Exclusion Criteria:

Study participants meeting any of the following criteria during screening evaluation will
be excluded from enrolling in GTAC:

1. Invasive ventilation (i.e. tracheostomy) in place.

2. Non-invasive ventilation dependent (defined as >22 hours per day)

3. Pregnancy.

4. Known Human Immunodeficiency Virus (HIV) , chronic Hepatitis B, or Hepatitis C
(because cells will be frozen down for future cell line generation).
We found this trial at
14
sites
Houston, Texas 77030
Principal Investigator: Stanley Appel, MD
Phone: 713-441-3420
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Durham, North Carolina 27710
(919) 684-8111
Principal Investigator: Richard Bedlack, MD, PhD
Phone: 919-668-2836
Duke University Younger than most other prestigious U.S. research universities, Duke University consistently ranks among...
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Minneapolis, Minnesota 55455
(612) 625-5000
Principal Investigator: George Manousakis, MD
Phone: 612-301-1535
Univ of Minnesota With a flagship campus in the heart of the Twin Cities, and...
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116th St and Broadway
New York, New York 10027
(212) 854-1754
Principal Investigator: Matthew Harms, MD
Phone: 212-305-2202
Columbia University In 1897, the university moved from Forty-ninth Street and Madison Avenue, where it...
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201 Presidents Circle
Salt Lake City, Utah 84108
801) 581-7200
Principal Investigator: Summer Gibson, MD
Phone: 801-581-3724
University of Utah Research is a major component in the life of the U benefiting...
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Seattle, Washington 98104
(206) 543-2100
Principal Investigator: Leo Wang, MD
Phone: 206-543-0454
Univ of Washington Founded in 1861 by a private gift of 10 acres in what...
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Ann Arbor, Michigan 48502
Principal Investigator: Stephen Goutman, MD, MS
Phone: 734-936-8775
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Ann Arbor, MI
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Aurora, Colorado 80045
Principal Investigator: Laura Foster, MD
Phone: 303-724-4644
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Edinburgh,
Principal Investigator: Siddharthan Chandran, MD
Phone: 44-0-131-465-9519
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Hershey, Pennsylvania 17033
Principal Investigator: Zachary Simmons, MD
Phone: 717-531-0003
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Los Angeles, California 90048
Principal Investigator: Robert Baloh, MD
Phone: 424-315-2694
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200 Lothrop St
Pittsburgh, Pennsylvania 15213
Principal Investigator: David Lacomis, MD
Phone: 412-864-2873
University of Pittsburgh Medical Center UPMC is one of the leading nonprofit health systems in...
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Portland, Oregon 97227
Principal Investigator: Chafic Karam, MD
Phone: 503-494-7269
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Saint Louis, Missouri 63110
Principal Investigator: Timothy Miller, MD, PhD
Phone: 314-362-6159
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