Phase 2/3 Study of Arimoclomol in Inclusion Body Myositis (IBM)

  • Research type

    Research Study

  • Full title

    Phase 2/3 Study of Arimoclomol in Inclusion Body Myositis (IBM) A Randomized, Double-blind, Placebo-Controlled Trial

  • IRAS ID

    245087

  • Contact name

    Michael Hanna

  • Contact email

    m.hanna@ucl.ac.uk

  • Sponsor organisation

    Orphazyme A/S

  • Eudract number

    2017-004903-33

  • Clinicaltrials.gov Identifier

    NCT02753530

  • Clinicaltrials.gov Identifier

    IND Number, 076773

  • Duration of Study in the UK

    3 years, 3 months, 1 days

  • Research summary

    Inclusion Body Myositis (IBM) is a chronic disorder in which muscles become inflamed and can cause muscle weakening. Weakness comes on slowly (over months or years) and progresses steadily and usually leads to severe weakness and wasting of arm and leg muscles. Patients may become unable to perform activities of daily living and most require assistive devices within 5 to 10 years of symptom onset.
    The cause of IMB is unknown but there is a new evidence which suggests that the pathology of IBM results from cellular changes caused by a variety of stressful events and diseases.
    Normally, in response to these stressful events, the body increases levels of Heat Shock Proteins (HSP) to help counteract and stop cellular changes. In patients with IBM increase of HSP is not sufficient enough and the toxic cellular changes cannot be reversed.
    Currently there are no effective treatments for IBM.
    The purpose of this study is to evaluate the safety and efficacy of potential new medicine for treatment of IMB, called Arimoclomol. The efficacy of this investigational medicine will be assessed by comparing its effects to a placebo. Arimoclomol is a medicine which prompts the human body to produce more HSP, which may help people with IMB to reverse the toxic cellular changes that might be responsible for the pathology of IBM.
    Patients’ participation in the study is expected to last approximately 22 months. At the beginning of the study patients will be randomly assigned to 1 of 2 treatment groups (Arimoclomol or Placebo), which means that patients will have 50% chance to receive the study medicine.
    Patients will receive study medication in the form of capsules, orally, for 20 months and will be required to attend 8 clinic visits. Patients will also have 7 phone visits including the follow-up call 30 days after the end of treatment.
    During the study patients will undergo physical examinations, complete questionnaires, have blood and urine tests and tests to measure muscle strength, and ECG (electrocardiogram).
    Patient safety will be monitored throughout the study.
    At the end of the study patients will return to their standard of care treatment.

  • REC name

    London - Surrey Borders Research Ethics Committee

  • REC reference

    18/LO/0696

  • Date of REC Opinion

    13 Jun 2018

  • REC opinion

    Further Information Favourable Opinion