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Xeroderma Pigmentosum: Codesign and testing of a specialised visor for ultraviolet radiation protection

Xeroderma Pigmentosum (XP) is a rare, inherited, incurable condition affecting approximately one in 250,000 of the general population.

People with XP cannot tolerate ultraviolet radiation (UVR) from natural light, not just sunshine. Miniscule exposure can cause skin and eye cancers from around the age of eight. Skin cancer is the main cause of death but can be avoided with complete protection from UVR. Preventing skin and eye cancers requires absolute protection from UVR. Protective films are applied to car windows, homes, schools, and offices. Outdoor activity requires full cover-up with clothing and headwear, even on a cloudy day. Clothing is purchased. Headwear is homemade. Patients and families say the headwear steams-up, interferes with seeing, talking, and they receive unkind comments on their appearance. Many avoid all of this by not covering up, with disastrous consequences including eye damage/visual impairment, eye, and skin cancers.

This project is working with XP charities, meeting patients with XP and their families, and industry to develop a commercially manufactured visor that is available on prescription to patients. 

Aims

To co-design and test a UVR protection visor with children and adults with XP.

Methods

A model of user engagement in medical device co-design and development.

Impact

Expected Outputs

A visor that does not steam-up, disturb breathing, vision, or communication and is acceptable to people with XP. A fully tested visor. Patient-recorded outcomes of the acceptability and functioning of the visor, and costs. Manufacturing/commercialisation plans.

Benefits

To patients: A wearable visor; reduced risk of eye/skin cancers and premature deaths. To the NHS: A visor that meets the UVR protection required to avoid skin/eye cancers in XP; adoption of the visor, reduced numbers of eye/skin cancers, premature deaths, and costs.

To the public: A specialist visor that can benefit people without XP, who are vulnerable to eye/skin cancers.

To Industry: Business opportunities nationally and internationally.

Related projects

Generation and evaluation of hand therapy devices for Epidermolysis Bullosa (GLOVE)

Generation and evaluation of hand therapy devices for Epidermolysis Bullosa and Dupuytrens: Adjustable Splint Glove manufacturing and commercialisation (GLOVED)

Project status: Completed

Principal Investigator

Investigators

Funding

Funding Body: UK Research and Innovation (UKRI)

Amount: £50,783

Period: August 2021 - March 2022

Funding Body: National Institute for Health Research (NIHR)

Amount: £755,636

Period: December 2017 - May 2020

Keywords

ULTRA-VIOLETRADIATIONUVRXERODERMA PIGMENTOSUMPHOTOPROTECTIONVISOR