This summer was filled with events for our INCLUDE Data Coordinating Center (DCC) team. For the first time, we were able to attend conferences in-person and share our INCLUDE DCC Data Hub with both the scientific and Down syndrome communities. With our portal team giving hands-on demonstrations at our event tables and multiple team members presenting about the incredible research being conducted, there is now even more excitement about the future of Down syndrome research.
Check out the events we attended and more information about our presentations below!
Trisomy 21 Research Society (T21RS) International Conference: June 9-12, 2022
This past June, the INCLUDE DCC participated in the 4th Trisomy 21 Research Society (T21RS) International Conference in Long Beach, California. This conference is one of the largest gatherings of scientists studying Down syndrome in the world, and the INCLUDE DCC team and our partners secured a strong presence at the event. We were excited to share our vision for a new age of Down syndrome research through our INCLUDE DCC Data Hub with this community. Our team also had an INCLUDE DCC booth where our portal experts demonstrated the INCLUDE Data Hub and answered questions.
The following list includes all INCLUDE DCC presentations from our team.
- The INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project: How NIH is Catalyzing Down Syndrome Research from Basic Science to Clinical Trials – Melissa Parisi, MD, PhD, NIH, INCLUDE DCC
- Overview of the INCLUDE Project: Harnessing NIH resources to promote health for people with Down syndrome - Melissa Parisi, MD, PhD, NIH, INCLUDE DCC
- Overview of the genesis and design of the INCLUDE Data Coordinating Center - Joaquin Espinosa, PhD, Crnic Institute, leader of the INCLUDE DCC Administrative and Outreach Core
- Data harmonization, integration, and sharing in the INCLUDE Data Hub - James Eddy, PhD, Sage Bionetworks, INCLUDE DCC
- INCLUDE Data Portal: Innovations in FAIR data for accelerated discoveries to benefit people with Down syndrome - Allison Heath, PhD, Children's Hospital of Philadephia, INCLUDE Investigator
Down Syndrome Medical Interest Group (DSMIG)-USA Annual Symposium: June 16-18, 2022
Also in June, Melissa Parisi, MD, PhD, and Joaquin Espinosa, PhD, from the INCLUDE DCC team participated in the virtual Down Syndrome Medical Interest Group (DSMIG)-USA Annual Symposium. With an audience of clinicians and medical professionals, our team demonstrated how the INCLUDE DCC can assist research and inform better medical care for people with Down syndrome.
National Down Syndrome Congress (NDSC) Annual Convention: June 23-26, 2022
At the end of June, the INCLUDE DCC was part of the National Down Syndrome Congress (NDSC) 50th Annual Convention in New Orleans, Lousiana. Thousands of people with Down syndrome and their families from across the globe attend the convention each year to hear from renowned experts in Down syndrome and have fun with others in the community.
Joaquin Espinosa, PhD, leader of the INCLUDE DCC Administrative and Outreach Core, gave presentations in both Spanish and English explaining the importance of people with Down syndrome participating in studies and how our efforts will improve research and medical care for this underserved community. INCLUDE DCC team members Melissa Parisi, MD, PhD, Sujata Bardhan and Linda Garcia along with INCLUDE investigator Anna Esbensen, PhD, gave a presentation titled: Diversity and Inclusion in DS Research: NIH and the INCLUDE Project. Our team also had an INCLUDE DCC booth where our portal experts demonstrated the INCLUDE Data Hub and answered questions.
Looking Ahead
In just a few months, we have introduced thousands of researchers and people in the Down syndrome community with our Data Hub and INCLUDE DCC resources, and we have even more planned for the future. Be sure to subscribe to our quarterly newsletter, so you do not miss any of our important updates.