Publication date: Jan 11, 2020
Credit: University of Aberdeen One of the first people in Scotland to take part in a new clinical trial for Huntington’s disease says the programme gives him hope for the future.
Sandy Patience, 57, originally from Avoch on the Black Isle and now living in Inverness, is among only nine people in Scotland and 801 globally to be taking part in the Roche Generation-HD1 study, being led in Aberdeen by Professor Zosia Miedzybrodzka of the University of Aberdeen.
Sandy, a railway signalman, says the disease has taken ‘everyone he has ever loved’ and that participating in the trial is what has kept him going since he received his own devastating diagnosis on December 4, 2017.
He said: “Huntington’s disease has had a massive effect on all my family.
Sandy travels every two months from his home in Inverness to Aberdeen Royal Infirmary where a sample of his brain fluid is taken for analysis, after which, a trial drug (RG6042) or a placebo is administered.
Professor Miedzybrodzka said: “Generation-HD1 is a truly ground-breaking phase 3 trial, bringing together researchers from around the world to work on we hope will be one of the definitive studies in the field of Huntington’s research.
“Obviously, there is a long way to go yet, but the trial does offer real hope to families with HD.
“The volunteers taking part are playing an important role for the entire Huntington’s disease community.
“We are exceptionally grateful to each patient taking part like Sandy, and their families for supporting them, and the many NHS and trial staff who are bringing this world-class study to the North.
I also want to thank all of the patients, families and donors who have supported all of our HD research in Aberdeen over the last 35 years, without whose generosity we would not have been selected as one of the Generation-HD1 trial centers. “
on how to seek specific advice and NHS case for HD in NHS Grampian and NHS Highland is available in the NHS Grampian and NHS Highland frameworks for care in HD Citation: Clinical trial gives hope for families with Huntington’s disease (2020, January 10) retrieved 11 January 2020 from This document is subject to copyright.