PAH/CTEPH Qualifying Physical Functioning

  • Research type

    Research Study

  • Full title

    PAH and CTEPH physical functioning qualitative research

  • IRAS ID

    315784

  • Contact name

    David Kiely

  • Contact email

    David.kiely1@nhs.net

  • Sponsor organisation

    Janssen - Johnson & Johnson Pharmaceuticals

  • Duration of Study in the UK

    0 years, 6 months, 30 days

  • Research summary

    Actelion are a subsidiary of Janssen, a Johnson & Johnson Pharmaceutical Company and will be sponsoring the study, they will be referred to as 'Actelion' throughout application.

    Actelion would like to conduct a cross-sectional, non-interventional study that will involve telephone interviews with 30 adult patients who have a confirmed diagnosis of pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH).

    The aim of the study is to identify physical functioning concepts that are meaningful and relevant to patients with regard to their PAH/CTEPH experience and how these could be measured in future clinical trials.

    The study team at the hospital site will screen patients to identify those that are eligible to participate. The study team will then contact the identified patients to enquire about whether they are interested in participating in the study. Eligible patients that are interested in participating will then be provided with either a paper copy of the informed consent form and patient information sheet or an electronic copy depending on their preference.

    Consenting patients will be provided with a patient questionnaire and have clinical data collected from medical records by hospital research teams. Following this the patient will be invited to participate in an interview to identify concepts of physical functioning that would be meaningful to them given their disease.

  • REC name

    Yorkshire & The Humber - Leeds West Research Ethics Committee

  • REC reference

    22/YH/0166

  • Date of REC Opinion

    29 Sep 2022

  • REC opinion

    Further Information Favourable Opinion