University of Washington (UW) uses Groopit to speed up the understanding of Autism by genetic variant.
Recent advances have made it possible to group children diagnosed with Autism Spectrum Disorder (ASD) based on their genetic variants, opening up opportunities to research more precisely and treat ASD by variant. The UW focuses on 30 of these single-gene variants and, until recently, conducted the research in a traditional fashion. Participants from around the world are flown to the UW for assessments, meaning they are infrequent, expensive, inconvenient, and not always possible. Raphael Bernie is using Groopit to change that.
Bernier, PhD, University of Washington professor of Psychiatry and Behavioral Sciences and research affiliate and associate director of the Center on Human Development and Disability (CHDD), is using Groopit to create a new model for research. He and his team are engaging with families in real-time, frequently, and using their constant input to drive research questions, bringing together researchers, practitioners, and families to speed up their collective understanding.
Bernier and his team set up a private group where each participant is vetted and approved. The participants are asked to take three actions repeatedly:
1. Record critical events as they happen including progress, milestones, challenges that are emerging, setbacks, and medical events. This helps researchers map events and development expectations.
2. Tell everyone about treatments and pursuits for solutions including treatments under consideration, starting, in progress, or completed. It is an opportunity to share outcomes, insights, and questions that, as appropriate, can be explored further.
3. Work together through this journey by sharing insights, hunches, successes, questions, referrals, advice, news, and more. It's a practical application that can be both useful and inspiring.
Groopit's social-inspired format helps build community, while the data centric backend allows researchers to discover patterns and clues, and because participation is directed, everyone is taking actions to speed up their gene-specific understanding of ASD.