Amyotrophic Lateral Sclerosis Web Based Patient Care Database: ALSConnection.Org
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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 |
| 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) |
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| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
Any patient diagnosed with ALS by a licensed physician.
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| United States, California | |
| Forbes Norris MDA/ALS Center | |
| San Francisco, California, United States, 94115 | |
| Principal Investigator: | Robert G Miller, MD | California Pacific Medical Center |
More Information
Additional Information:
No publications provided
| ClinicalTrials.gov Identifier: | NCT00302198 History of Changes |
| Other Study ID Numbers: | 23.112 |
| Study First Received: | March 10, 2006 |
| Last Updated: | March 1, 2010 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by Forbes Norris MDA/ALS Research Center:
|
Amyotrophic Lateral Sclerosis |
Additional relevant MeSH terms:
|
Amyotrophic Lateral Sclerosis Sclerosis Motor Neuron Disease Spinal Cord Diseases Central Nervous System Diseases Nervous System Diseases |
Neurodegenerative Diseases TDP-43 Proteinopathies Neuromuscular Diseases Proteostasis Deficiencies Metabolic Diseases Pathologic Processes |
ClinicalTrials.gov processed this record on June 17, 2013