Research Resources

Research Resources

NDF Research Strategy

The NDF are delighted to say that our research efforts in the UK at one of the world's leading children's hospitals GOSH have gone from strength to strength!  The NDF are now looking forward to new collaborations in the US working with leading professionals globally to achieve our ultimate goal of finding a treatment for the Norrie Disease hearing loss. Download our Norrie Disease Foundation Research Strategy 2021 (PDF) for more information.

NDF Educational Settings Leaflet

The NDF Educational Settings Leaflet (ppt 1558kb) aims to provide general information about Norrie Disease (ND), its management and how to support the education  of children and young people in schools and educational settings.

Download our Educational Settings Leaflet

The following 3 resources have been very kindly produced for the NDF by Costello Medical’s Pro Bono services in memory of Professor Maria Bitner-Glindzicz who sadly died in 2018. Maria worked so hard for the Norrie Disease community and was the driving force behind the pioneering research into hearing loss.

Article: The impact of sight and hearing loss in patients with Norrie Disease

An  article reviewing the Impact of sight and hearing loss in patients with Norrie disease. This work has been published as an Open Access paper in BMJ Open and can be accessed here (pdf).   It discusses the advantages of Dual Sensory clinics in patient care and was undertaken with clinicians caring for Norrie patients at Great Ormond Street Hospital for Children.

A targeted Norrie Disease Literature Review (compendium) and accompanying report

The aim of this Targeted Literature Review was to produce a consolidated list and summary of previously published research related to Norrie Disease and its characteristics and epidemiology, management and patient/carer experience.

We hope this Literature Review (xls 164kb) will be a valuable resource for healthcare professionals and members of the Norrie Disease community to identify articles relevant to specific topics of interest within the field.

An accompanying Literature Review Report, (word 215kb) summarises how the literature review was conducted.