PLATINUM2025

Clinical Data Interchange Standards Consortium Inc

Clear Data. Clear Impact.

aka CDISC   |   Austin, TX   |  http://www.cdisc.org

Mission

CDISC creates clarity in clinical research by bringing together a community of experts across the entire healthcare spectrum to develop and advance data standards of the highest quality. With standards that are open and available to all, we enable the accessibility, interoperability, and reusability of research data. From accelerating time to market to driving more discoveries and breakthroughs, CDISC standards clear the way for more meaningful and efficient research that has greater impact on global health. CDISC standards have been adopted by the world’s leading research organizations and are required by regulatory agencies around the globe.

Ruling year info

2011

President and CEO

Chris Decker

CEO

Chris Decker

Main address

401 W 15th St Ste 800

Austin, TX 78701-1666 USA

Show more contact info

EIN

04-3503931

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

From Alzheimer’s to kidney disease to malaria and beyond, CDISC standards have helped drive critical breakthroughs in treating diseases. For decades, we have worked hand-in-hand with our community of expert volunteers, member organizations, and non-profit partners around the world, developing standards that help mission-focused foundations achieve their goals. We enable global researchers to efficiently aggregate and analyze data across studies so they can find the hidden connections that make a difference in the lives of the patients.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Standards Development

For over 20 years, we've taken a rigorous approach to developing and advancing data standards for clinical research and beyond. Each standard is informed and shaped by the expertise of those at the forefront of research today, making them not just of the highest quality, but also attuned to the practicalities of their implementation.

Population(s) Served
Adults
Children and youth

Where we work

  • Africa

  • Asia

  • Europe

  • North America

  • United States

Videos

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

-Electronic Case Report Forms

This metric is no longer tracked.
Totals By Year
Related Program

Standards Development

Type of Metric

Other - describing something else

Context Notes

Growth of data collection tools

QRS Terminologies

This metric is no longer tracked.
Totals By Year
Related Program

Standards Development

Type of Metric

Other - describing something else

Context Notes

Growth of terminologies to aid clinical research

# of Biomedical Concepts released for clinical research

This metric is no longer tracked.
Totals By Year
Related Program

Standards Development

Type of Metric

Other - describing something else

Context Notes

Increasing impact for data flow from protocol through submission

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

• An urgent need: Clear data is essential to the success of research and the development of new treatments and therapies that people need. But far too often this data remains confined to one organization or one moment in time. When CDISC standards are applied, data is collected, organized, and analyzed in a clear and consistent manner so that all researchers can leverage and share information from individuals and studies around the world, discovering new treatments and impacting people’s health and their lives.
• Maximizing data’s potential: With CDISC standards, it’s possible to amplify the full value of data. Information that's critical to driving forward clinical research for a multitude of therapeutic areas and improving global health becomes accessible across geographies and disciplines, interoperable across studies and treatments, and reusable for research today and tomorrow.
• Focus on breakthroughs: Researchers spend a substantial amount of time deciphering, translating, and mapping unstandardized data. But implementing CDISC standards means that data can be structured effectively and easily analyzed, generating greater efficiencies that leave more time to focus on discoveries that will have invaluable impact on clinical research and global health.

Convening a community
Collaboration and inclusivity have always been bedrocks of CDISC's culture – and they remain central to our process today. It's why we convene a global community of experts from across the research spectrum and facilitate the development of standards that are open and available to all, enabling data sharing around the world.

Diverse perspectives
Our strength derives from the diverse perspectives of our community. Whether coming from a pharmaceutical organization, academic institution, regulatory agency, non-profit, or beyond, our contributors bring a range of experiences and backgrounds that drive more meaningful clinical research.

Collective power
CDISC harnesses the vision and insights of each volunteer, member organization, and partner to define a focused approach for capturing and analyzing clinical research data. When the entire research community works together, we have the power to solve issues too complex for any one individual, team, or organization to address alone.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people’s needs and how we can help them achieve their goals,

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.),

  • What challenges does the organization face when collecting feedback?

    We don’t have any major challenges to collecting feedback,

Financials

Clinical Data Interchange Standards Consortium Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Clinical Data Interchange Standards Consortium Inc

Board of directors
as of 03/18/2025
SOURCE: Self-reported by organization
Board chair

Brooke Hinkson

Merck

Term: 2025 - 2026

Brooke Hinkson DIRECTOR

Merck

Brooke Hinkson

Merck

Catherine Chronaki

HL7 Europe

Chris Decker

D-Wise

Christina Reith

University of Oxford’s Nuffield Department of Population Health

David Hardison

Deloitte

David Hardison DIRECTOR

Retired

Erik Pulkstenis CHAIR

Annexon Bio

Erik Pulkstenis

Abbvie

Hiroshi Masumoto

Daiichi Sankyo Co

Jonathan Chainey DIRECTOR

Roche

Karen Curran

IQVIA

Lisa Lin

FDA CDER

Lisa Lin DIRECTOR

FDA

Margaret Keegan

Quintiles

Mihoko Okado

Niigata University, Japan Association for Medical Informatics

Pandu Kulkarni

Lilly

Patrick Nadolny

Sanofi

Rhona O'Donnell DIRECTOR

Steve Rosenberg

Oracle

Wenjun Bao

SAS

Wenjun Bao DIRECTOR

JMP Clinical

Zhengqing Li

Merck

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? yes

Organizational demographics

info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability