Genetic Study of Amyotrophic Lateral Sclerosis in Norway
GAIN
Genetisk Studie av Amyotrofisk Lateral Sklerose (ALS)
1 other identifier
observational
1,200
1 country
17
Brief Summary
The purpose of this study is to explore the genetic causes relevant for ALS development in Norway.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Aug 2019
Longer than P75 for all trials
17 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
August 1, 2019
CompletedFirst Submitted
Initial submission to the registry
November 2, 2021
CompletedFirst Posted
Study publicly available on registry
November 15, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 31, 2030
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 31, 2035
January 8, 2025
January 1, 2025
11.4 years
November 2, 2021
January 6, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (3)
Gene frequency
Number of patients with disease causing mutations in high penetrant ALS genes
2020-2030
New ALS genes
Identify new ALS genes in the Norwegian ALS population
2024-2030
Genetic risk factors
Identify genetic risk factors for ALS in Norway.
2022-2030
Study Arms (1)
Individuals diagnosed with ALS
Individuals diagnosed with ALS that are being followed through the Norwegian health-care system. ALS patients ( probable or definite per El-Escorial criteria)
Interventions
Eligibility Criteria
Individuals diagnosed with ALS that are being followed through the Norwegian health-care system.
You may qualify if:
- Probable or definite ALS
- Eligible to consent
You may not qualify if:
- \- not competent to give consent
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Sykehuset Telemarklead
- ALS Norgecollaborator
- Helse Sor-Ostcollaborator
Study Sites (17)
Haukeland University Hospital, Department of Neurology
Bergen, Norway
Nordland Hospital Trust, Department of Neurology
Bodø, Norway
Vestre Viken Hospital Trust, Department of Neurology
Drammen, Norway
Førde Hospital Trust, Department of Neurology
Førde, Norway
Østfold Hospital Trust, Department of Neurology
Grålum, Norway
Fonna Hospital Trust, Department of Neurology
Haugesund, Norway
Sørlandet Hospital Trust, Department of Neurology
Kristiansand, Norway
Innlandet Hospital Trust, Department of Neurology
Lillehammer, Norway
Akershus University Hospital, Department of Neurology
Lørenskog, Norway
Møre and Romsdal Hospital Trust, Department of Neurology
Molde, Norway
Nord-Trøndelag Hospital Trust, Department of Neurology
Namsos, Norway
Oslo University Hospital, Department of Neurology
Oslo, Norway
Telemark Hospital, Department of Neurology
Skien, Norway
Stavanger University Hospital, Department of Neurology
Stavanger, Norway
University hospital of North Norway, Department of Neurology
Tromsø, Norway
St. Olavs Hospital, Department of Neurology
Trondheim, Norway
Vestfold Hospital Trust, Department of Neurology
Tønsberg, Norway
Biospecimen
Whole blood
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Helle Høyer
Telemark Hospital Trust, Norway
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- CASE ONLY
- Time Perspective
- CROSS SECTIONAL
- Target Duration
- 5 Years
- Sponsor Type
- OTHER GOV
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
November 2, 2021
First Posted
November 15, 2021
Study Start
August 1, 2019
Primary Completion (Estimated)
December 31, 2030
Study Completion (Estimated)
December 31, 2035
Last Updated
January 8, 2025
Record last verified: 2025-01