DSG Press Release

Back DSG Press Release – April, 2022
DSG helps build Global Registry Research Database for Rett Syndrome
Kelly Morrione, Marketing Associate

Written By
Kelly Morrione,

DSG helps build Global Registry Research Database for Rett Syndrome

MALVERN, Pa., April, 2022 – DSG, Inc., a global leader of eClinical software solutions and services for the life sciences industry has successfully supported their client, the Rett Syndrome Research Trust (RSRT), a non-profit organization whose mission it is to cure Rett syndrome and related MECP2 disorders, in building out their Rett Syndrome Global Registry database.

“Our goal is to have the registry dataset meet the same data integrity and quality requirements as data collected in a clinical trial so that it can be used by biopharma to support regulatory filings like NDA/BLA, inform clinical trial design, and support endpoint selection, quality of life assessments, or help define clinically meaningful change during development” said Jana von Hehn, PhD, Chief Scientific Officer at RSRT.

As it stands there is no nationally or internationally defined registry for Rett syndrome. With the valuable data and collective knowledge that parents have related to their children with Rett Syndrome, it is critical to have a research-ready, clinical-trial-grade database that combines resources to aid clinical development. There is an urgent demand to leverage comprehensive medical records and create additional centralized datasets to support care, research, and therapeutic development. DSG, with its proven industry-certified database services has innovated a registry for RSRT to achieve their goals.

DSG’s database services have enabled RSRT to rapidly build solutions for data collection, management, and analysis, helping them establish a modern registry in an efficient and accelerated manner by ensuring clean data with real-time data export and tools for analysis. RSRT primarily leverages the eCaseLink platform to build the Rett Syndrome Global Registry. Our unified eCaseLink platform helps collect and summarize parent and medical history information to generate clinical-trial-grade datasets that provide context to parent perception for comprehensive medical records summarized by RSRT elsewhere. eCaseLink is a flexible platform that allows DSG to tailor unique approaches to study and product registry requirements.

Due to the innovation of the Rett Syndrome Global Registry on the eCaseLink platform, RSRT has been contacted by other non-profit organizations with similar missions to understand their registry model. In addition, the FDA has released new guidance on assessing registries to support regulatory decision-making for drug and biological products that DSG’s platform and design features strongly adhere to with flexibility to develop novel functionality for RSRT. DSG continues to build and support RSRT’s Rett Syndrome Global Registry as they make enhancements to their registration and data management services.

“We believe in RSRT’s mission and will continue to provide the most effective solutions surrounding their registry and make efforts to assist them and the Rett syndrome community,” said Tony Varano, founder of DSG. “We applaud the RSRT team with their continued commitment and expertise to finding a cure for Rett syndrome.”

About DSG

DSG, Inc. is a leading global eClinical provider with a unified suite of innovative technology solutions for the global clinical research community. DSG's eClinical software platform provides competitive advantage that is cost-effective and quickest to build. DSG’s award-winning eCaseLink solutions are used in thousands of clinical trials around the globe.

About the Rett Syndrome Research Trust

RSRT is a nonprofit organization with a highly personal and urgent mission: achieving a cure for Rett syndrome and related disorders caused by defects in the MECP2 gene. Since its founding in 2008, RSRT has awarded $64 million, more than any other Rett organization in the world, to leading scientists pursuing targeted research on Rett. RSRT funds and spearheads global scientific and clinical activities advancing the most promising curative approaches. To date, every biopharmaceutical company pursuing a cure for Rett syndrome is doing so because they leveraged discoveries and resources incubated with RSRT funding. A highly efficient nonprofit, RSRT has spent an average of 95 percent of every dollar on its research program. To learn more, please visit www.reverserett.org

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