Building health data infrastructures is crucial for understanding causes, consequences and treatment options for common diseases. Denmark and the UK are home to excellent resources in the form of biobanks, large genetic-based cohorts and extensive health registries. With careful consideration, these data can be used to take genetics from disease-association to meaningful impact and start to make precision medicine a reality.

Inflammatory Bowel Disease (IBD) is a pressing issue worldwide, affecting almost 1% of the population in both countries – twice as many living with type 1 diabetes. Globally, the problem is even more urgent as newly industrialised countries experience a rapid increase without adequate clinical and research infrastructure to deal with it.

Ongoing efforts are unlocking unique national resources of clinical and biological IBD data spanning pre- and post-diagnostic eras. Knowledge exchange and collaboration around the created infrastructures to identify shared challenges and opportunities are crucial to harnessing the power of British and Danish registries and biobanks across disease areas towards better patient outcomes.

Programme

15.00 Welcome and introductions by Sarah Riley, Deputy Ambassador of the United Kingdom to Denmark & Anne Laugesen, PhD, UK Science and Innovation Network

15.05 Presentations

Emma Holten, Feminist Activist: The value of the individual to society and reflections on living with IBD.

Prof. Charlie Lees MD, Edinburg University, UK: The impact of IBD and the rising unmet need worldwide.

Prof. Tine Jess MD, PREDICT Centre of Excellence, Aalborg University, DK: Harnessing the power of Danish data resources to find the causes and cures for chronic illness – making the impossible a reality.

Dr. Carl Anderson, Wellcome Sanger Institute: Using large genetic repositories and next-generation sequencing to unlock the secrets of IBD.

Rebecca Cosgriff, Head of Strategy, Data for R&D, NHS England: Building an NHS Research secure data environment network for England, creating opportunities for genomics and health registries.

16.20 Discussion and audience Q&A – shared challenges and opportunities

16.40 End of livestream

UK-DK Health Dialogue: IBD and Health Data Infrastructures