Here you will find scientific publications and other research outputs from the CureQ consortium. We aim to make our work accessible to the scientific community, clinicians, and the broader Huntington and SCA community.

Featured Publications:

Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases
Authors: Rensink M, Bolt I, Schermer M
Journal: European Journal of Human Genetics (2024)
This article explores the ethical challenges that come with the development of predictive models aimed at estimating age of onset and disease progression in Huntington’s Disease (HD) and Spinocerebellar Ataxias (SCA). Its goal is to anticipate potential ethical concerns early on and to outline which ethical questions must be addressed to support the responsible development and use of these models. The authors provide a structured research agenda, guiding both scientists and policymakers in embedding ethics into future clinical and research practices.

Publication link here: Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda | European Journal of Human Genetics