Assessing Patients’ Experiences With Acute Hepatic Porphyria

• Research type

  Research Study

• Full title

  Assessing Patients’ Experiences With Acute Hepatic Porphyria: Exit Interviews

• IRAS ID

  306686

• Contact name

  Penelope Stein

• Contact email

  p.stein@nhs.net

• Sponsor organisation

  ALNYLAM PHARMACEUTICALS, INC.

• Duration of Study in the UK

  0 years, 5 months, 22 days

• Research summary

  To explore the long-term patient experience of givosiran, Alnylam (Sponsor of Givosiran) plans to conduct a stand-alone exit interview study with patients who have exited the Open label extension (OLE) studies and continue to take givosiran through the commercial market or expanded access. RTI-HS or its research partner in Europe, Global Perspectives (GP), will conduct 1-hour telephone interviews with 25 patients in the United States, United Kingdom, Sweden, and Spain, and provide an honorarium to each participant.

  The objective of the study is to understand - AHP-related symptoms and impacts, Patients’ treatment experiences with givosiran during the OLE studies and The meaningfulness of any improvements observed.

• REC name

  London - City & East Research Ethics Committee

• REC reference

  22/PR/0810

• Date of REC Opinion

  18 Jul 2022

• REC opinion

  Further Information Favourable Opinion