Trigeminal Neuralgia Patient Advisory Board Meeting

• Research type

  Research Study

• Full title

  Trigeminal Neuralgia Patient Advisory Board Meeting

• IRAS ID

  206130

• Contact name

  Ken Getz

• Contact email

  kengetz@ciscrp.org

• Sponsor organisation

  Biogen

• Duration of Study in the UK

  0 years, 0 months, 2 days

• Research summary

  The non-profit Center for Study & Information on Clinical Research Participation (CISCRP) is collaborating with the Trigeminal Neuralgia Association UK and Biogen, Inc. on a project to better understand patient experiences and thought processes regarding clinical trials.

  We plan to conduct one 10-person advisory board meeting in London, UK. The following main areas of inquiry will be addressed:
  • Overall general experiences living with Trigeminal Neuralgia.
  • Reactions to specific proposed clinical trial characteristics and how they may impact one’s decision to participate in a clinical trial.
  • Reactions to medication sizes, in tablet form. Tablets are sealed in a transparent plastic bag inside a transparent container.
  • Recommendations for improving clinical trials for patients with Trigeminal Neuralgia.

  The advisory board will be moderated by Annick Anderson, Associate Director of Research Services at CISCRP, and Jessica Leslie, Project Manager at CISCRP. The Chief Investigator will be Ken Getz, Director of Sponsored Research Programs at the Tufts Center for the Study of Drug Development, and Board Chair of the non-profit CISCRP. While Mr. Getz is based in the US, Dr. Martin Toal, Head of Clinical Convergence at Biogen, is UK-based and will be onsite for the duration of the focus group. Please note that the investigator and all project staff have no knowledge of, involvement with, or interests in the outcomes of any clinical trials in which advisory board participants may have taken part. The advisory board will emphasize patient experiences with past and proposed clinical trial protocols.

  More broadly, CISCRP does not conduct or recruit for clinical trials. We are a 501(c)(3) nonprofit dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process.

• REC name

  London - Stanmore Research Ethics Committee

• REC reference

  16/LO/1156

• Date of REC Opinion

  22 Jun 2016

• REC opinion

  Further Information Favourable Opinion