Light The Way - ALS

• Research type

  Research Study

• Full title

  Light The Way - Evaluation of perceived benefits arising from an online support portal for individuals at risk of genetic amyotrophic lateral sclerosis or Motor Neurone Disease (ALS/MND) in the United States and United Kingdom

• IRAS ID

  329194

• Contact name

  Patrick Short

• Contact email

  patrick@sanogenetics.com

• Sponsor organisation

  Sano Genetics

• Duration of Study in the UK

  3 years, 0 months, 0 days

• Research summary

  Access to genetic testing and genetic counselling for Amyotrophic lateral sclerosis and Motor Neurone Disease (ALS/MND) is not routinely performed in clinical practice. This study will test for ALS-causing genetic variants in individuals with a diagnosis of ALS/MND or Symptoms of ALS/MND or who are asymptomatic but have a family history of ALS/MND in order to understand the prevalence of ALS-causing genetic variants in the USA and UK population, and to explore the psychological impact of receiving education and support for those at risk. No study drug will be administered. A saliva sample will be collected for genetic testing. Participants will provide consent for recontact in the future, for clinical studies based on their ALS-causing genetic variant(s), or other information collected during this screening protocol.

• REC name

  South West - Frenchay Research Ethics Committee

• REC reference

  23/SW/0138

• Date of REC Opinion

  19 Feb 2024

• REC opinion

  Further Information Favourable Opinion