Content Validity and Inter- and Intra-rater Reliability of the IBMFRS

  • Research type

    Research Study

  • Full title

    A study to assess Content Validity and Inter- and Intra-rater Reliability of the IBM Functional Rating Scale (IBMFRS)

  • IRAS ID

    283161

  • Contact name

    Tara Symonds

  • Contact email

    tara.symonds@clinoutsolutions.com

  • Sponsor organisation

    Clinical Outcomes Solutions

  • Duration of Study in the UK

    0 years, 3 months, 1 days

  • Research summary

    The purpose of conducting this research is to explore patient and clinician understanding of the impacts surrounding Sporadic Inclusion Body Myositis (sIBM). This will help us understand more about how sIBM affects patients' day to day activiites. In addition, as part of this project we will also be exploring if the Inclusion Body Myositis Functional Rating Scale (IBMFRS), is a suitable measure to capture the impacts reported by participants.

    The IBMFRS is a measure used by clinicians to score the severity of the day to day impacts experienced by patients with sIBM. This is a non-drug, non-interventional study.

    There are two specific parts to this study. Firstly interviews will be conducted with both sIBM expert clinicians and patients diagnosed with sIBM. These interviews will last approximately one hour. The clinician interviews will be conducted using the telephone whilst the patient interviews will be face to face.

    The second part of the study involves sIBM patients being rated by health care professionals (nurse practitioners, physiotherapists or clinicians experienced in treating IBM patients)using the IBMFRS measure. This will be done face to face and also at a later date over the telephone. Some of these face to face ratings will be video recorded (with the patient's permission) and rated at a later time by other HCPs.

  • REC name

    London - Surrey Research Ethics Committee

  • REC reference

    20/LO/0801

  • Date of REC Opinion

    29 Jul 2020

  • REC opinion

    Further Information Favourable Opinion