The Value of Registries and Biobanking to the ASD Community within the Social and Cultural Landscape

ASD registries and biobanks provide critical support for research and clinical service development. Different models exist reflecting varied social and cultural contexts. For example national registries, e.g. in Scandinavian countries, integrate publicly available health data while elsewhere other registries have been driven by a specific research agenda, e.g. genetics research. Important insights have already been obtained from registries and linking phenotypic data with biological data, can potentiate biomedical research. However successful registries/ biobanks rely on engagement by the ASD community and are as much about necessity as are trust, engagement and ethical considerations. Here we discuss four experiences of registries/ biobanking. A successful researcher led UK registry, ASD UK has leveraged engagement with clinical services. A parent advocacy group for a rare ASD related condition, Phelan McDermid Syndrome, showed that parents could inspire scientists to research the condition. A national consultation with ASD Stakeholders in Ireland revealed strong support but also mistrust that a registry/ biobank could be used prejudicially. In China a biobank/ registry project will enhance autism awareness and research but faces huge geographical challenges. We will discuss the challenges encountered and how social and cultural contexts has been influential in shaping these initiatives.
Saturday, May 16, 2015: 10:30 AM-12:30 PM
Grand Ballroom C (Grand America Hotel)
Panel Chair:
L. Gallagher
A. Reichenberg
11:20 AM
Creating an Interactive National Registry for ASD in China
X. Zou H. Guo X. Wang B. Chen P. H. Lipkin