National Collaborative Usher Study

The aim of this major study is to develop the next stage in our understanding of Usher syndrome by linking information about the type and severity of hearing balance and vision loss in people with Usher syndrome with the gene that causes their disorder. The National Collaborative Usher Study (NCUS) is in its final year (2007). Clinical and genetic information has been collected from 185 families and on over 220 individuals. Molecular diagnosis has been made on the majority of study participants. Further genetic analysis on certain families has yet to be completed.

Dr Nell Rangesh's poster (pdf, 195kb) showing the early findings from the hearing and balance study. The poster need to be displayed horizontally. When you open it, place your cursor on it and right-click on your mouse to select 'rotate clockwise'.

About the National Collaborative Usher Study Usher syndrome is a major cause of deafblindness in the UK and is caused by a set of recessively inherited genes. Every year between 3% and 6% of people born deaf and partially hearing may also develop this progressive loss of vision.
Information sheet for adult participants The study aims to give people and families with Usher syndrome better information about their disorder. To do this we need to look at hearing, balance and sight, as well as the genes that can cause Usher syndrome.
NCUS Newsletter
New dual sensory clinic and the response to its proposal
An update on the study The study is now in its final phase. Read here to know about the study and what the researchers are doing in the final phase.

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