Exploring understanding of NSCT as an intervention for HD.

• Research type

  Research Study

• Full title

  Exploring understanding of Neural Stem Cell Transplantation (NSCT) as an intervention for Huntington’s disease (HD).

• IRAS ID

  211225

• Contact name

  Richard J Hellyar

• Contact email

  hellyarrj@cardiff.ac.uk

• Sponsor organisation

  Cardiff University

• Duration of Study in the UK

  1 years, 5 months, 7 days

• Research summary

  NSCT has been identified as a potential therapeutic intervention for the treatment of Huntington’s disease (HD). This neurosurgical procedure utilises stem cells, which are injected into the brain of effected individuals and is intended to improve symptoms.
  The primary aim of this project is to gain insight into the perceptions and understanding about Neural Stem Cell Transplantation (NSCT) amongst potential recipients and is intended to inform and underpin the development of information giving procedures for potential recipients.
  Firstly three purposively targeted professionals, with previous involvement with NSCT, will be approached and interviewed in order to explore their past experience with the procedure. This will address their recollections of the experience, understanding, questions and concerns posed by individuals approached with regards to NSCT. This scoping phase will then be utilised to underpin/provide a background for minimally-structured interviews with 6, genetically positive individuals who have yet to show symptoms of HD.
  This second phase, using minimally-structured interviews, is intended to elicit the perceptions/understanding surrounding NSCT amongst potential recipients. These participants will be recruited from Cardiff Huntington’s Disease Centre clinic, based at Cardiff University (Hadyn Ellis Building). Participants will be identified at the centre by Cardiff University staff members and will be presented with a letter inviting them to participate alongside a Participant Information Sheet. Following reply, by pre-paid envelope and having indicated a desire to engage with the project, they will be asked to consent.
  Once consented, recruited participants will be individually interviewed, in the presence of their partner, spouse, family member if requested. Interviews will take place in an appropriate, confidential setting, agreed by the participant and in accordance with the Cardiff University Lone Worker policy.
  The interviews, will last approximately one hour and will be recorded, transcribed and examined in order to identify themes as is consistent with Interpretative Phenomenological Analysis

• REC name

  Wales REC 1

• REC reference

  16/WA/0232

• Date of REC Opinion

  26 Sep 2016

• REC opinion

  Further Information Favourable Opinion