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NCT Number: NCT05119387

Genetic Study of Amyotrophic Lateral Sclerosis in Norway

The purpose of this study is to explore the genetic causes relevant for ALS development in Norway.

Recruiting

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Key information

Conditions

Amyotrophic Lateral Sclerosis Central Nervous System Diseases Metabolic Diseases Motor Neuron Disease Nervous System Diseases Neurodegenerative Diseases Neuromuscular Diseases Nutritional and Metabolic Diseases Proteostasis Deficiencies Spinal Cord Diseases TDP-43 Proteinopathies

Age range

16 year–100 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Haukeland University Hospital, Department of Neurology, Bergen, Norway

Loading trial locations.

About this study

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informed consent will be asked to complete a small questionnaire regarding family history and have a blood sample withdrawn.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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Probable or definite ALS
  • Eligible to consent

Exclusion criteria

  • not competent to give consent

Treatment and study plan

observation

Other

Observation of genetic characteristics

Primary outcomes

  1. Gene frequency

    Time frame: 2020-2030

    Number of patients with disease causing mutations in high penetrant ALS genes

  2. New ALS genes

    Time frame: 2024-2030

    Identify new ALS genes in the Norwegian ALS population

  3. Genetic risk factors

    Time frame: 2022-2030

    Identify genetic risk factors for ALS in Norway.

Study contacts

Contact information is provided by the study sponsor or research team.

Helle Høyer

CONTACT

[email protected]

35003146 ext. 0047

Sponsors and collaborators

Lead sponsor

Sykehuset Telemark

Other Gov

Collaborators

  • ALS Norge
  • Helse Sor-Ost

Registry information

Official study title

Genetisk Studie av Amyotrofisk Lateral Sklerose (ALS)

Acronym: GAIN

Important dates

Study start
2019
Primary completion
2030
Study completion
2035
First posted
Nov 15, 2021
Registry last updated
May 19, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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