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Helmsley Charitable Trust Commits $5.4 Million to CDISC to Transform Data Standards for Clinical Research

CDISC to enhance standardization of medical research data to increase ease of sharing globally.

New York, NY, August 28, 2018 – The Leona M. and Harry B. Helmsley Charitable Trust announced today $5.4 million in funding to the Clinical Data Interchange Standards Consortium (CDISC), supporting its work to standardize clinical data to ease data sharing among research scientists and to improve medical research around the globe.

Standardization is a critical component to open data, which can help lead to breakthroughs that impact people’s health. In the absence of data standards, studies are conducted using different formats, housed in research siloes, and are rarely interoperable or reusable. The standards that CDISC creates address these challenges by providing agreed-upon definitions to allow different groups of researchers to easily and meaningfully share their data. With better data standards, global researchers then have access to larger and more consistent datasets, lending greater power to their analyses and increasing the potential for new health discoveries.

“As a leading funder of chronic disease research, we see an urgent need for open data to accelerate the pace of research so that it can have positive impact on patients’ lives,” said Stephanie Cuskley, CEO of the Helmsley Charitable Trust. “Data standardization is vital to creating an environment where new discoveries can happen more quickly. CDISC is a leader in making this possible.”

Helmsley’s support will enable CDISC to create data standards for type 1 diabetes (T1D) and Crohn’s disease (CD) research, building CDISC’s infrastructure, tools, and training for academic researchers. In time, these interoperable data will foster better medical decision-making, drug discovery, and healthcare for T1D and CD patients worldwide. Benefitting both the T1D and CD communities, the new CDISC standards will allow for more seamless information sharing across research centers, improve the quality, usefulness, and consistency of clinical data, and evaluate the effectiveness of emerging treatments.

Helmsley’s commitment also enables CDISC to continue following time-tested, consensus-based processes to consolidate and transform standards into real-world-data compatible standards, and ensure optimal data quality, validity, and use. Once harmonized and accessible via open-source, web-based tools, the transformed standards will help researchers who are not experts in data standards build clinical datasets that can be shared with others. This, along with educational support, aims to promote ethical data sharing.

“This amazing new support by the Helmsley Charitable Trust allows us to take critical next steps toward open data globally,” said David R. Bobbitt, President and CEO of CDISC. “CDISC standards bring clarity to data. We can over the coming years reduce the threshold for researchers to access and utilize standardization.”


CDISC creates clarity in clinical research by convening a global community to develop and advance data standards of the highest quality. Required by the United States Food and Drug Administration (FDA) and Japan’s Pharmaceuticals and Medical Devices Agency (PMDA) and adopted by the world’s leading research organizations, CDISC standards enable the accessibility, interoperability, and reusability of data. With the help of CDISC standards, the entire research community can maximize the value of data for more efficient and meaningful research that has invaluable impact on global health. CDISC is a 501(c)(3) global nonprofit charitable organization and is headquartered in Austin, Texas, with hundreds of employees, volunteers, and member organizations around the world. www.cdisc.org

About the Helmsley Charitable Trust

The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional efforts in the U.S. and around the world in health and select place-based initiatives. Since beginning active grantmaking in 2008, Helmsley has committed more than $2 billion for a wide range of charitable purposes. For more information, visit www.helmsleytrust.org


Ann P. White, +1.512.363.5826, awhite@cdisc.org

Silan Akgul, +1.212.953.2854, sakgul@helmsleytrust.org