Ignite Creation Date:
2025-12-25 @ 3:48 AM
Ignite Modification Date:
2026-03-04 @ 10:42 PM
Study NCT ID:
NCT01772602
Status:
RECRUITING
Last Update Posted:
2025-04-09
First Post:
2013-01-17
Is NOT Gene Therapy:
True
Has Adverse Events:
False
Brief Title:
The National Amyotrophic Lateral Sclerosis Registry
Sponsor:
Organization:
Raw JSON
{'hasResults': False, 'derivedSection': {'miscInfoModule': {'versionHolder': '2025-12-24'}, 'conditionBrowseModule': {'meshes': [{'id': 'D000690', 'term': 'Amyotrophic Lateral Sclerosis'}, {'id': 'D016472', 'term': 'Motor Neuron Disease'}], 'ancestors': [{'id': 'D013118', 'term': 'Spinal Cord Diseases'}, {'id': 'D002493', 'term': 'Central Nervous System Diseases'}, {'id': 'D009422', 'term': 'Nervous System Diseases'}, {'id': 'D019636', 'term': 'Neurodegenerative Diseases'}, {'id': 'D057177', 'term': 'TDP-43 Proteinopathies'}, {'id': 'D009468', 'term': 'Neuromuscular Diseases'}, {'id': 'D057165', 'term': 'Proteostasis Deficiencies'}, {'id': 'D008659', 'term': 'Metabolic Diseases'}, {'id': 'D009750', 'term': 'Nutritional and Metabolic Diseases'}]}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'OTHER', 'observationalModel': 'OTHER'}, 'enrollmentInfo': {'type': 'ESTIMATED', 'count': 30000}, 'targetDuration': '5 Years', 'patientRegistry': True}, 'statusModule': {'overallStatus': 'RECRUITING', 'startDateStruct': {'date': '2010-10'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2025-04', 'completionDateStruct': {'date': '2040-12', 'type': 'ESTIMATED'}, 'lastUpdateSubmitDate': '2025-04-07', 'studyFirstSubmitDate': '2013-01-17', 'studyFirstSubmitQcDate': '2013-01-18', 'lastUpdatePostDateStruct': {'date': '2025-04-09', 'type': 'ACTUAL'}, 'studyFirstPostDateStruct': {'date': '2013-01-21', 'type': 'ESTIMATED'}, 'primaryCompletionDateStruct': {'date': '2040-12', 'type': 'ESTIMATED'}}, 'outcomesModule': {'primaryOutcomes': [{'measure': 'The National Amyotrophic Lateral Sclerosis (ALS) Registry', 'timeFrame': '1 year', 'description': 'To determine the incidence and prevalence of Amyotrophic Lateral Sclerosis in the US.'}], 'secondaryOutcomes': [{'measure': 'Risk factors of ALS', 'timeFrame': '1 year', 'description': 'To learn more about the potential risk factors for ALS'}]}, 'oversightModule': {'oversightHasDmc': False}, 'conditionsModule': {'keywords': ['Amyotrophic Lateral Sclerosis', "Lou Gehrig's Disease", 'Motor Neuron Disease'], 'conditions': ['Amyotrophic Lateral Sclerosis']}, 'referencesModule': {'seeAlsoLinks': [{'url': 'http://www.cdc.gov/als', 'label': 'Click here to enroll in the National ALS Registry'}]}, 'descriptionModule': {'briefSummary': 'The purpose of this registry is to (A) better describe the incidence and prevalence of Amyotrophic Lateral Sclerosis (ALS) in the United States;(B) examine appropriate factors, such as environmental and occupational, that may be associated with the disease; (C) better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease) associated with the disease; and (D) better examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS.', 'detailedDescription': "The National ALS Registry's Research Notification System allows person with ALS to participate in clinical trials."}, 'eligibilityModule': {'sex': 'ALL', 'stdAges': ['ADULT', 'OLDER_ADULT'], 'minimumAge': '18 Years', 'samplingMethod': 'NON_PROBABILITY_SAMPLE', 'studyPopulation': 'ALS cases in the United States', 'healthyVolunteers': False, 'eligibilityCriteria': 'Inclusion Criteria:\n\n\\- U.S. citizens 18 years of age or older\n\nExclusion Criteria:\n\n\\-'}, 'identificationModule': {'nctId': 'NCT01772602', 'briefTitle': 'The National Amyotrophic Lateral Sclerosis Registry', 'organization': {'class': 'FED', 'fullName': 'Centers for Disease Control and Prevention'}, 'officialTitle': 'The National Amyotrophic Lateral Sclerosis Registry', 'orgStudyIdInfo': {'id': 'CDC-NCEH/ATSDR-5768'}}, 'contactsLocationsModule': {'locations': [{'zip': '30333', 'city': 'Atlanta', 'state': 'Georgia', 'status': 'RECRUITING', 'country': 'United States', 'contacts': [{'name': 'Paul Mehta, MD', 'role': 'CONTACT', 'email': 'PMehta1@cdc.gov', 'phone': '770-488-0556'}, {'name': 'Kevin Horton, DrPH, MSPH', 'role': 'CONTACT', 'email': 'dhorton@cdc.gov', 'phone': '770-488-1555'}, {'name': 'Paul Mehta, MD', 'role': 'PRINCIPAL_INVESTIGATOR'}], 'facility': 'CDC', 'geoPoint': {'lat': 33.749, 'lon': -84.38798}}], 'centralContacts': [{'name': 'Paul Mehta, MD', 'role': 'CONTACT', 'email': 'PMehta1@cdc.gov', 'phone': '770-488-0556'}, {'name': 'Kevin Horton, DrPH, MSPH', 'role': 'CONTACT', 'email': 'dhorton@cdc.gov', 'phone': '770-488-1555'}], 'overallOfficials': [{'name': 'Paul Mehta, MD', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'Centers for Disease Control and Prevention'}]}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'Centers for Disease Control and Prevention', 'class': 'FED'}, 'collaborators': [{'name': 'US Department of Veterans Affairs', 'class': 'FED'}, {'name': 'Centers for Medicare and Medicaid Services', 'class': 'FED'}], 'responsibleParty': {'type': 'SPONSOR'}}}}