Genetic Study of Amyotrophic Lateral Sclerosis in Norway
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Observation.
- Who it may be relevant to
- Registry conditions: Amyotrophic Lateral Sclerosis. Basic parameters: 16 years — 100 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Norway
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Genetisk Studie av Amyotrofisk Lateral Sklerose (ALS)
Overview
The purpose of this study is to explore the genetic causes relevant for ALS development in Norway.
Detailed description
After being informed about the study and potential risks, all patients giving written informed consent will be asked to complete a small questionnaire regarding family history and have a blood sample withdrawn. Blood samples, questionnaires, clinical information and signed consent is send to Department of Medical Genetics, Telemark Hospital Trust were the genetic analysis is performed successively throughout the recruitment period. Patients can choose to have their genetic results returned in a diagnostic setting.
Interventions
- Other Observation
Observation of genetic characteristics
Primary outcome measures
- Gene frequency [Time frame: 2020-2030]
- New ALS genes [Time frame: 2024-2030]
- Genetic risk factors [Time frame: 2022-2030]
Eligibility criteria
Inclusion criteria
- Probable or definite ALS
- Eligible to consent
Exclusion criteria
\- not competent to give consent
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-only
Study locations
Norway · 17 centers
- Haukeland University Hospital, Department of Neurology — Bergen
- Nordland Hospital Trust, Department of Neurology — Bodø
- Vestre Viken Hospital Trust, Department of Neurology — Drammen
- Førde Hospital Trust, Department of Neurology — Førde
- Østfold Hospital Trust, Department of Neurology — Grålum
- Fonna Hospital Trust, Department of Neurology — Haugesund
- Sørlandet Hospital Trust, Department of Neurology — Kristiansand
- Innlandet Hospital Trust, Department of Neurology — Lillehammer
- … and 9 more centers
Identifiers
NCT: NCT05119387 · 2018/1916