An update on the study

The study is now in its final phase. We will be concentrating on disseminating information to the 220 individuals with Usher syndrome who have taken part since 2003. Publication of the overall findings together with analysis of the genetic information continues through 2007 and 2008.

The outcomes from the NCUS will have far reaching consequences both for the families who took part and for families not yet diagnosed. Our understanding of how Usher impacts on the individual and family, clinically, genetically and psychologically has been greatly enhanced as a result of this collaboration between Sense, the scientists from University College London and the families. Sense would like to thank everyone involved in the NCUS, especially the families for their cooperation and support since 2003.

The steering panel which has guided the work of the NCUS since 2002 met finally in July 2007. Panel members included scientists and research officers from the Institutes of Child Health and Ophthalmology, London, Sense staff, a parent and a person with Usher.

Members of the National Collaborative Usher Study steering panel

Back Row (left to right)
Mr. Andrew Webster, Moorfields
Dr Maria Bitner, Institute of Child Health
Nigel Marriott, Lay member, Sense Trustee
Prof Tim Atkinson, Lay member

Middle Row (left to right)
Prof Linda Luxon, Institute of Child Health
John Trevelyan, Sense
Melanie Gonsalves, minute secretary, Sense
Dr Mazal Cohen, University of Manchester
Liz Cook, Family Co-ordinator, Sense
Dr Nell Rangesh, Institute of Child Health

Seated
Mary Guest, NCUS Project Manager, Sense