Incorporation of SCN2A Community Data into RDCA-DAP Offers Novel Perspectives on Autism and Epilepsy, Paving the Way for Breakthroughs in Therapies and Support.
TUCSON, Ariz., February 1 — In a significant step to enhance research efforts for SCN2A-related autism and epilepsy, Critical Path Institute (C-Path) and FamilieSCN2A are pleased to announce a new data sharing agreement. This collaboration involves integrating vital data from SCN2A-funded clinical trials into C-Path’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), marking a notable progression in the pursuit of understanding and treating these conditions.
FamilieSCN2A, a global leader in SCN2A-related research, advocacy, and community engagement, is at the forefront of understanding and addressing the complexities of SCN2A-related Disorders (SRD). This collaboration brings together the world’s largest SCN2A community and a comprehensive body of research, offering fresh perspectives and insights into these challenging conditions.
“Our collaboration with FamilieSCN2A is a pivotal step in C-Path’s quest to understand and facilitate the development of treatments for rare neurological disorders, including those related to the SCN2A gene,” said Alexandre Bétourné, Ph.D., Pharm.D., Scientific Director for RDCA-DAP at C-Path. “The integration of their extensive data into RDCA-DAP enriches our research capabilities and brings us closer to innovative treatment solutions for individuals with SCN2A-related disorders.”
Leah Schust Myers, Executive Director of FamilieSCN2A, also shared her insights: “Our partnership with C-Path and the inclusion of our data into RDCA-DAP is a testament to our commitment to making a meaningful difference in the lives of those affected by SCN2A-related disorders. This collaboration not only amplifies our impact but also signifies our role in a global effort to drive advancements in treatment and care for these conditions.”
RDCA-DAP, a joint initiative by C-Path and NORD with support from FDA, offers a unique platform promoting cooperation among various stakeholders, including academic institutions, industry leaders, healthcare organizations, and patient advocacy groups. It accelerates the development of treatments for rare diseases through data sharing, analysis, and collaboration.
The contribution of FamilieSCN2A data to RDCA-DAP marks a significant step forward in research specific to SCN2A-related disorders. It exemplifies the power of collaborative efforts in driving innovative discoveries, not just for SRD, but for the rare disease community at large. It underscores the vital role of FamilieSCN2A in advocating and supporting neuropathy research, highlighting the potential of shared knowledge in the pursuit of cures.
Organizations interested in contributing to RDCA-DAP can learn more and reach out at c-path.org/rdca-dap or email rdcadap@c-path.org. The platform is open and accepting applications for use; visit portal.rdca.c-path.org for further information.
About Critical Path Institute
Critical Path Institute (C-Path) is an independent, nonprofit established in 2005 as a public-private partnership, in response to the FDA’s Critical Path Initiative. C-Path’s mission is to lead collaborations that advance better treatments for people worldwide. Globally recognized as a pioneer in accelerating drug development, C-Path has established numerous international consortia, programs and initiatives that currently include more than 1,600 scientists and representatives from government and regulatory agencies, academia, patient organizations, disease foundations and pharmaceutical and biotech companies. With dedicated team members located throughout the world, C-Path’s global headquarters is located in Tucson, Arizona and C-Path’s Europe subsidiary is headquartered in Amsterdam, Netherlands. For more information, visit c-path.org.
Critical Path Institute is supported by the Food and Drug Administration (FDA) of the Department of Health and Human Services (HHS) and is 54% funded by the FDA/HHS, totaling $19,436,549, and 46% funded by non-government source(s), totaling $16,373,368. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, FDA/HHS or the U.S. Government.
About The FamilieSCN2A Foundation
The mission of The FamilieSCN2A Foundation is to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders around the world. Founded in 2015 by parents of children affected by a change in the SCN2A gene, the organization has funded more than $4.5 million in research. For more information contact FamilieSCN2A Foundation at +1 301-252-8070 or email us here. Visit us on social media:
Facebook, Twitter, LinkedIn, Instagram, YouTube, TikTok.
Contacts:
Roxan Triolo Olivas
C-Path
520.954.1634
rolivas@c-path.org
Kissy Black
C-Path
615.310.1894
kblack@c-path.org
