Amyotrophic Lateral SclerosisCAPTURE-ALSNCT03489278
Clinical Procedures to Support Research in ALS
An observational study of Amyotrophic Lateral Sclerosis and ALS-Frontotemporal Dementia, run by University of Miami at 11 sites in United States.
Trial summary
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Amyotrophic Lateral Sclerosis, ALS-Frontotemporal Dementia, Primary Lateral Sclerosis
- How many people
- 1,200 participants
- Where
- 11 sitesUnited States
- Study dates
- 15 Feb 2018to Jun 2034
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Affected patients receiving care at a clinical center that uses Epic as EHR.
Who may be able to join
- Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).
- Receiving care at a clinical center that uses Epic as its EHR.
- Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).
Who cannot join
- Inability to understand English and/or Spanish
Trial locations and contacts
11 sites in 1 country. Contact the study team or a site near you to ask about taking part.
11 sites in 1 country
United States11 sites, 10 recruiting
- Recruiting
Duke University
Durham, North Carolina, 27708
Hailey Zampa, hailey.zampa@duke.edu
Xiaoyan Li
- Recruiting
University of California, Irvine
Irvine, California, 92868
Pola Gaid, 657-233-1122, polagaid@hs.uci.edu
Namita Goyal, MD
- Recruiting
University of Kansas Medical Center
Kansas City, Kansas, 66205
Osvaldo Plascencia, 913-945-9922, oplascencia@kumc.edu
Jeffrey Statland, MD
- Recruiting
University of Miami
Miami, Florida, 33136
Jessica Hernandez, 305-243-2345, jph93@miami.edu
Michael Benatar, MBChB, MS, DPhil
- Recruiting
Hennepin County Medical Center
Minneapolis, Minnesota, 55404
Daphne Fruchtman, 612-873-2607, DFruchtman@hhrinstitute.org
Samuel Maiser, MD
- Active, not recruiting
Columbia University
New York, New York, 10032
- Recruiting
Stanford University
Palo Alto, California, 94304
Rabia Farooquee, 650-709-8735, rfarooquee@stanford.edu
Mawell Greene, MD
- Recruiting
Providence Health & Services
Portland, Oregon, 97213
Angela Phan, angelina.phan@providence.org
Nicholas Olney, MD
- Recruiting
University of Texas San Antonio Health Science Center
San Antonio, Texas, 78229
Randee Kent-Baron, kentbaron@uthscsa.edu
Carlayne Jackson, MD
- Recruiting
California Pacific Medical Center
San Francisco, California, 94115
Chow Saephanh, 415-600-3935, SaephaC@cpmcri.org
Jonathan Katz, MD
- Recruiting
Wake Forest University
Winston-Salem, North Carolina, 27157
Lauren Richmond, 336-716-9632, lauren.richmond@advocatehealth.org
James Caress, MD
About this study
Official title: Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
Read the detailed description
The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.
- Conditions
- Amyotrophic Lateral Sclerosis, ALS-Frontotemporal Dementia, Primary Lateral Sclerosis, Progressive Muscular Atrophy
- Medical subject headings
- Amyotrophic Lateral Sclerosis, Motor Neuron Disease, Muscular Atrophy, Spinal
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Affected | Affected with ALS or a related disorder. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
Measured: 12 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted5 Apr 2018
- Study start15 Feb 2018
- Primary completionJun 2032 (estimated)
- Study completionJun 2034 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Amyotrophic Lateral SclerosisStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 1,200 participants (estimated)
Sponsor and investigators
- Lead sponsor
- University of Miami
- Sponsor type
- University, hospital or other
- Collaborators
- Muscular Dystrophy Association, National Institute of Neurological Disorders and Stroke (NINDS), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH)
- Responsible party
- Principal investigator, Michael Benatar, University of Miami
- Investigators
- Michael Benatar, MBChB, MS, DPhil, Principal investigator, University of Miami
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03489278
- Sponsor's protocol ID
- 20170785
- Other IDs
- U54NS092091
- Acronym
- CAPTURE-ALS
- Status last verified
- Jun 2026
- First submitted
- 23 Mar 2018
- Last updated
- 15 Jun 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 15 Jun 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
- ClinicalTrials.gov ID
- NCT03489278
- Acronym / sponsor ID
- CAPTURE-ALS / 20170785
- Conditions
- Amyotrophic Lateral Sclerosis, ALS-Frontotemporal Dementia, Primary Lateral Sclerosis, Progressive Muscular Atrophy
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,200 participants (estimated)
- Lead sponsor
- University of MiamiUniversity, hospital or other
- Collaborators
- Muscular Dystrophy Association, National Institute of Neurological Disorders and Stroke (NINDS), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH)
- Study start
- 15 Feb 2018 (actual)
- Primary completion
- Jun 2032 (estimated)
- Study completion
- Jun 2034 (estimated)
- First posted
- 5 Apr 2018 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
Detailed description
The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Affected | – | –Affected with ALS or a related disorder. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Affected patients receiving care at a clinical center that uses Epic as EHR.
Key inclusion criteria (3 listed)
- Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).
- Receiving care at a clinical center that uses Epic as its EHR.
- Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).
Key exclusion criteria (1 listed)
- Inability to understand English and/or Spanish
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
Time frame: 12 months
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 15 Jun 2026.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Michael Benatar, MBChB, MS, DPhil principal investigator
University of Miami
11 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Amyotrophic Lateral Sclerosis and ALS-Frontotemporal Dementia, run by University of Miami at 11 sites in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 15 Jun 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 11 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Michael Benatar, MBChB, MS, DPhil (1-844-837-1031, projectcreate@miami.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Using the ALS Toolkit for collecting and using electronic health record data for research purposes (time frame: 12 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 15 Jun 2026.