Title: Development of an online educational resource focussed on the benefits of a community approach to genomic medicine and research
Funder: Medical Research Foundation

Abstract: The Windows of Hope project (www.WOHproject.org), led by Professor Crosby and Dr Baple, is a translational research programme that works closely with the Anabaptist (Amish and Mennonite) communities, local healthcare and special needs providers across North America. The overarching aim of the project is to utilise molecular and functional research studies, combined with clinical expertise, to improve healthcare outcomes and understanding of inherited disease within these communities. Since the project was established the underlying genetic cause of over 30 inherited disorders has been identified. In the last 8 years, this work and our parallel studies undertaken with other international communities has largely been funded by the MRC. Through clinical and diagnostic laboratory collaborations these research findings have driven disease-specific management strategies leading to measurable differences in clinical, developmental and social outcomes. In addition, accredited diagnostic genetic testing for founder mutations present in the communities has been negotiated and made available at significantly reduced cost. WOH is currently undergoing merger with the New Leaf Clinic For Special Children (http://newleafclinic.org/) and will become fully integrated within a network of interconnected clinics that support and serve the Anabaptist communities, in which our research program is centrally involved. Due to a lack of knowledge and awareness amongst both the community and health care providers regarding the many newly described conditions, individuals affected by these disorders have often been subjected to needless, expensive and sometimes painful clinical investigations. Medical Research Foundation Alexander Fleming dissemination awards have funded us to address these issues by disseminating clinically-relevant research findings to affected families, healthcare and other special needs workers working within the communities. The challenges faced by workers serving the Amish community are also faced by health care and educational providers, and research teams seeking to avoid inequality and enhance and support health and educational outcomes in communities across the globe. We propose to share the knowledge and skills we have obtained through our translational research work with the Amish communities with health care and allied professionals and academics working with communities in the UK and internationally with the aim of supporting their important work and fostering new research and clinical collaborations. To achieve this goal, we will develop a freely accessible online course focused on the benefits of a community approach to genomic medicine and research, leading to educational credits and certification at course completion. Amish families affected by inherited disorders we have previously described and who have seen the benefits of our research dissemination approaches will be an integral part of the course alongside their health care and special educational needs providers. The support of Health Education England, Genomics England and the University of Exeter Medical School infrastructure will ensure targeted and wide reaching impact of this educational resource. Using this approach, we aim to reduce the health inequalities faced by families affected by inherited disease and their communities and ultimately improve health and developmental outcomes into the long term, providing a long lasting legacy stemming from our MRC funded research studies. Our network of educational support combined with our specialist knowledge of working with families with rare inherited disorders within the community setting, means that we are uniquely positioned to achieve these goals.


Research activity codes: 2.6 RESOURCES AND INFRASTRUCTURE (AETIOLOGY);7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT)
Health categories: CONGENITAL DISORDERS;DISPUTED AETIOLOGY AND OTHER