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Amyotrophic Lateral Sclerosis Web Based Patient Care Database: ALSConnection.Org

This study has been completed.
Sponsor:
ClinicalTrials.gov Identifier:
NCT00302198
First Posted: March 14, 2006
Last Update Posted: March 2, 2010
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
Collaborator:
Muscular Dystrophy Association
Information provided by:
Forbes Norris MDA/ALS Research Center
  Purpose
The purpose is to collect data for ALS research. The data will be used to learn more about the origin of ALS and to improve quality of care for people with ALS. The information you provide in the ALS registry will be used to evaluate variations in patient care, adherence to standards of care and also to help foster ALS research.

Condition Intervention
Amyotrophic Lateral Sclerosis Behavioral: ALS Registry

Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: Amyotrophic Lateral Sclerosis Web Based Patient Care Database

Resource links provided by NLM:


Further study details as provided by Forbes Norris MDA/ALS Research Center:

Estimated Enrollment: 15000
Study Start Date: January 2006
Study Completion Date: February 2010
Primary Completion Date: February 2010 (Final data collection date for primary outcome measure)
Detailed Description:

Any person who has been diagnosed with ALS by a physician can enroll into this registry.

The information you provide in the ALS registry will be used to evaluate variations in patient care, adherence to standards of care and also to help foster ALS research. An additional focus of this website will be to educate participating patients and visitors to this site about ongoing ALS research.

  Eligibility

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Any patient diagnosed with ALS by a licensed physician.
Criteria

Inclusion Criteria:

  • There are no inclusion and exclusion criteria beyond the fact that a person needs to have ALS in order to enroll.
  Contacts and Locations
Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00302198


Locations
United States, California
Forbes Norris MDA/ALS Center
San Francisco, California, United States, 94115
Sponsors and Collaborators
Forbes Norris MDA/ALS Research Center
Muscular Dystrophy Association
Investigators
Principal Investigator: Robert G Miller, MD California Pacific Medical Center
  More Information

ClinicalTrials.gov Identifier: NCT00302198     History of Changes
Other Study ID Numbers: 23.112
First Submitted: March 10, 2006
First Posted: March 14, 2006
Last Update Posted: March 2, 2010
Last Verified: February 2010

Keywords provided by Forbes Norris MDA/ALS Research Center:
Amyotrophic Lateral Sclerosis

Additional relevant MeSH terms:
Sclerosis
Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Pathologic Processes
Neurodegenerative Diseases
Nervous System Diseases
Neuromuscular Diseases
Spinal Cord Diseases
Central Nervous System Diseases
TDP-43 Proteinopathies
Proteostasis Deficiencies
Metabolic Diseases


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