Balance in Neurofibromatosis type 2

  • Research type

    Research Study

  • Full title

    Neurofibromatosis type 2 (NF2) associated Balance Dysfunction.

  • IRAS ID

    144827

  • Contact name

    James Tysome

  • Contact email

    jamestysome@yahoo.com

  • Sponsor organisation

    Cambridge University Hospitals NHS Foundation Trust

  • Research summary

    Neurofibromatosis type 2 (NF2) is a rare genetic condition, which in England is managed by one of 4 nationally commissioned centres. In the Cambridge centre we are currently responsible for the care of 127 patients. NF2 patients, by diagnostic criteria, have bilateral benign tumours of the hearing and balance nerves which result in varying degrees of hearing and balance difficulty. There is much known about the hearing problems in patients with NF2 and the benefit of rehabilitation with conventional and implantable hearing aids. However, little is known about the problems those with NF2 have with their balance.
    We are aiming to evaluate the degree of balance difficulty using established and validated questionnaires. Following this, those whose results suggest poor balance will be offered further assessment within the audiology department at Addenbrooke's Hospital. This otherwise routine assessment will include clinical tests of balance as well as a test which stimulates the balance system in order to assess its performance.
    At the conclusion of the balance assessment, some participants will be offered a further appointment for rehabilitation, if it is felt beneficial.
    A repeat of the initial questionnaires will be distributed to demonstrate any improvement in balance ability following the rehabilitation.
    We hope that this will lead to better care for all patients with NF2 in England (and further afield) following dissemination of our results.

  • REC name

    North East - Newcastle & North Tyneside 2 Research Ethics Committee

  • REC reference

    14/NE/1016

  • Date of REC Opinion

    9 Jun 2014

  • REC opinion

    Favourable Opinion