More research is needed into the diagnosis, management and treatment of facial palsy. Part of the role of Facial Palsy UK is to raise funds for research. At the time of launching Facial Palsy UK in July 2012, very few research projects investigating the prevalence, causes and treatments of facial palsy were being undertaken. Facial Palsy UK is dedicated to commissioning and funding world-class research that will benefit all those affected by facial palsy.
Facial Palsy UK is currently planning a modified Delphi Study to identify research priorities in relation to facial palsy.
- Conducting focus groups with stakeholders (e.g. patients, carers, clinicians, academics) to identify the research topics viewed as important.
- Carrying out a literature review of existing facial palsy research to supplement the research topics identified through focus groups.
- Using research topics gathered by the literature review and qualitative findings to conduct a Delphi survey of stakeholders in facial palsy.
- Producing a report highlighting the top 10 research priorities and the Delphi process.
- Writing up the study for publication.
This exercise will produce a list of priorities published for researchers looking into the causes, treatment, prevention and consequences of facial palsy. We will involve patients, carers and clinicians equally to decide where priorities lie.
We are establishing a research committee through the Facial Palsy UK Medical Advisory Board. This committee will prioritise areas for research in line with the outcomes of the Delphi study above and decide on funding applications. The research committee is chaired by Mr Adel Fattah. The patient representative is Sarah Healey. By promoting research into the causes and consequences of facial palsy, we aim to provide a better future for people living with the condition.
Future plans include:
- Instigate a pilot study to evaluate the psychological, social and physical impacts of facial palsy in the UK. This could be a collaborative study between centres with track records in the areas of psychosocial research and health economics, or an academic researcher could be used. It is envisioned that the pilot data would be the basis of a larger study to be funded through the Department of Health’s National Institute for Health Research (NIHR) scheme (e.g. Research for Patient Benefit, RFPB).
- Employ a suitably qualified research assistant.
- Encourage patients to sign up for the Public Involvement Programme with NIHR to influence research.
- Demonstrate evidence to NICE to improve guidelines for care of patients with facial palsy.
Planned tools to aid research:
One of the aims of Facial Palsy UK is to fund the development of a portable, vision-based computerised tool to allow uniform data entry and outcome assessment in facial palsy clinics.
Research into treatments of facial palsy is currently hampered by the lack of a simple objective method of assessing, documenting and comparing the severity of facial palsy in patients treated in different centres. Previous attempts have been cumbersome, expensive, or not widely adopted by practicing clinicians. The reductions in the cost of technologies, such as video-enabled tablet computers, now offer a platform on which such an assessment tool could be built. However, the niche nature of this subject makes it unlikely that a commercial company would invest in the creation of the required software, without the certainty of widespread adoption. Such a software tool could be the basis of a national register of facial palsy which would help to ensure that outcomes are uniformly good across the UK.
Exciting future avenues of research:
With our future research we hope to fund the development of better treatment options for people with facial palsy.
Exciting possible avenues of research include the use of synthetic muscle powered by sensors on the unaffected side of the face, and the use of growth factors to speed up the recovery rate after nerve damage.
Application for funding
Once a research panel is established and funds are available, application dates will be published.
Last reviewed: 12-11-2016 || Next review due: 12-11-2017