PEGS: Patients experiences of Genetic Conditions & Services

• Research type

  Research Study

• Full title

  PEGS: Patients experiences of living with a genetic condition and utilizing clinical genetic services

• IRAS ID

  134748

• Contact name

  Rhona MacLeod

• Contact email

  rhona.macleod@cmft.nhs.uk

• Sponsor organisation

  Central Manchester and Manchester University Hospitals NHS Foundation Trust

• Duration of Study in the UK

  6 years, 3 months, 31 days

• Research summary

  The study will consider 4 main topics:
  • The impact of a genetic condition – either for the individual and/or their family member(s)
  • Evaluation of the psychological support provided to individuals and their families (To date this has included thematic analysis, Interpretative Phenomenological Analysis & Grounded Theory)
  • Users’ experiences of the clinical genetics service (e.g. testing/counselling)
  • Communication of genetic risk information – how information is communicated within genetics clinics and subsequently within the affected family.

  These areas will be explored using a range of research techniques, but predominantly using qualitative methods, such as questionnaires and semi-structured interviews.

• REC name

  North West - Greater Manchester Central Research Ethics Committee

• REC reference

  15/NW/0013

• Date of REC Opinion

  13 Feb 2015

• REC opinion

  Further Information Favourable Opinion