ARG1020-Qualitative Interviews in CMS

• Research type

  Research Study

• Full title

  Qualitative Interviews in Congenital Myasthenic Syndromes (CMS)

• IRAS ID

  350779

• Contact name

  Claire Burbridge

• Contact email

  claire.burbridge@clinoutsolutions.com

• Sponsor organisation

  Argenx

• Clinicaltrials.gov Identifier

  N/A, N/A

• Duration of Study in the UK

  0 years, 3 months, 1 days

• Research summary

  This study will involve in-depth interviews with patients (N=20) who have been diagnosed with Congenital Myasthenic Syndromes (CMS) who meet the inclusion/exclusion criteria. Each patient will take part in either one interview lasting approximately 90 minutes, or two interviews lasting 45 minutes each, 1-2 weeks apart.
  Interviews will include both concept elicitation interviewing to understand the patient experience of the condition and cognitive debriefing type interviewing to evaluate the MG-ADL and MGII for use in CMS.
  Interviews will be undertaken in the United States (US), Canada, UK and Spain. The interviews will follow a semi-structured discussion guide. All interviews will be conducted by a trained interviewer via video-assisted software (i.e., Zoom).
  No therapeutic intervention or treatment will be administered as part of this study.
  

• REC name

  North West - Greater Manchester West Research Ethics Committee

• REC reference

  25/NW/0027

• Date of REC Opinion

  15 Jan 2025

• REC opinion

  Favourable Opinion