The impact of information and support on people with Nystagmus

• Research type

  Research Study

• Full title

  To evaluate the impact of information and support on people with Nystagmus

• IRAS ID

  203192

• Contact name

  James Self

• Contact email

  J.E.Self@soton.ac.uk

• Sponsor organisation

  University Hospitals Southampton NHS Foundation Trust

• Duration of Study in the UK

  2 years, 0 months, 0 days

• Research summary

  Nystagmus is defined as involuntary movement of the eyes. It can occur from the early months of life (congential), secondary to ocular pathology (cataracts and retinal disease) or can be acquired later on in life (neurological disease). Nystagmus is a visually impairing condition and is estimated to affect 24 people per 10,000. There is no treatment for Nystagmus and because of this it is important to make sure that those affected are given useful information about the condition and are well supported.
  The aim of this study is to investigate the information and support patients and those around them receive about Nystagmus. This will allow us to highlight how much impact support services have on these patients and their families and where these services can be used more efficiently.
  We will measure this by questionnaire. There are four main questionnaires each designed for a different target group:
  Questionnaire 1 – Patient affected by Nystagmus ( 11 years)
  Questionnaire 2 – Patient affected by Nystagmus (11-18 years)
  Questionnaire 3 - Patient affected by Nystagmus (18 years+)
  Questionnaire 4 - Family members, Carers and Teachers of those with Nystagmus

  Participants will be identified through outpatient clinics, nystagmus databases from other ongoing nystagmus studies, through charity events and using advertisments (posters). The questionnaire will be distributed nationally via nystagmus charity events.
  The questionnaires will be given to participants in the clinical setting or via post.

  This study will provide evidence of the impact health care professionals, government support and charities have on people affected by Nystagmus. It will also highlight areas where we need to improve education of the condition and help us to spread awareness of Nystagmus and the charities that support them.

• REC name

  East Midlands - Leicester South Research Ethics Committee

• REC reference

  16/EM/0418

• Date of REC Opinion

  29 Sep 2016

• REC opinion

  Further Information Favourable Opinion