ALS Exit Interview Project
Research type
Research Study
Full title
Qualitative Interview Project to Understand the Experiences of Persons Living with SOD1-ALS and their Caregivers
IRAS ID
282283
Contact name
Ana Maria Rodriguez
Contact email
Sponsor organisation
Biogen
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
0 years, 8 months, 17 days
Research summary
This is a telephone interview project looking to understand the experiences of persons living with Amyotrophic Lateral Sclerosis
(ALS) (referred to as 'PALS') and their caregivers, as they come to the end of taking part in a Phase 3 clinical trial (The VALOR Study). The interviews will aim to gather information on participant's experiences with ALS prior to and during the VALOR Study. Interviews will also seek to understand changes during the clinical trial period which either were, or would be considered meaningful to PALS and their caregivers. PALS and caregivers will take part in separate interviews lasting around 60 minutes each, although PALS with communication difficulties will be invited to have a caregiver assist during their interview. Conducting in-depth interviews with PALS and their caregivers will allow us to better understand how the symptoms of ALS translate into impacts on PALS and their caregivers, including emotional, social, and quality of life impacts.REC name
North of Scotland Research Ethics Committee 1
REC reference
20/NS/0058
Date of REC Opinion
4 May 2020
REC opinion
Favourable Opinion