Clinical Data Interchange Standards Consortium Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
TO CREATE CONNECTED STANDARDS ACROSS THE STUDY INFORMATION LIFECYCLE TO ENABLE ACCESSIBLE, INTEROPERABLE, AND REUABLE DATA FOR MORE MEANINGFUL AND EFFECTIVE RESEARCH.
- Income
- $8.9 million
- Spending
- $8.5 million
- Spent on programs
- 72%
- Reserves
- 2.5 months of spending
- Largest source of income
- donations and private grants, 48%
- Employees
- 33
- Volunteers
- 1,100
- Highest pay
- $381,652, president & ceo
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Fair: 55 out of 100. Higher than 27% of charities in its peer group (health care, $1m to $10m).
Reserves
10 of 35Spendable reserves would cover 2.5 months of spending.
Debt
5 of 20It owes 56% of what it owns.
Living within its means
15 of 15Income exceeded spending by 5% of income.
Income trend
10 of 15Income fell 3% on the year before.
Spending floor
15 of 1572% of spending went to programs and raising each dollar of donations cost 8 cents.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 67% of charities in its peer group (health care, $1m to $10m).
Independent board
25 of 2512 of 12 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $4.6 million spent. IN 2024, CDISC INTRODUCED A STRATEGIC ROADMAP TO EXPAND AND ENABLE STANDARDS DRIVEN AUTOMATION ACROSS THE END-TO-END STUDY INFORMATION LIFECYCLE FROM STUDY DESIGN THROUGH RESULTS. TO REALIZE THIS VISION, CDISC IS MOBILIZING ITS WORK AROUND THREE KEY PILLARS: EXPAND & CONNECT, ENABLE & AUTOMATE, AND ENGAGE & ADOPT. THESE THREE STRATEGIC PILLARS POSITION CDISC AND THE INDUSTRY FOR FUTURE INNOVATION AND TRANSFORMATION. WITH EXPAND & CONNECT, WE AIM TO EMBRACE AND ADOPT DIGITAL STUDY DESIGN, CREATING CONNECTED STANDARDS ACROSS THE CLINICAL RESEARCH INFORMATION LIFECYCLE WHILE DEFINING A CLEAR PIPELINE FOR INTEGRATING NEW DATA SOURCES. THROUGH ENABLE & AUTOMATE, WE DEVELOP READY-TO-USE IMPLEMENTATION STANDARDS THAT ARE ENABLED THROUGH TECHNOLOGY, REDUCE VARIABILITY AND FOCUSED ON INTEROPERABILITY AND AUTOMATION. FINALLY, ENGAGE & ADOPT ESTABLISHES A CONTINUOUS FEEDBACK LOOP ACROSS THE CDISC COMMUNITY, PRIORITIZING THE NEEDS OF PRODUCERS AND CONSUMERS TO LOWER THE BARRIER TO STANDARDS USE, AND INCREASING COMMUNICATION TO BETTER ENABLE OUR STAKEHOLDERS.THIS YEAR, AS WE CELEBRATED OUR 25TH ANNIVERSARY HIGHLIGHTING KEY PARTNERSHIPS, VOLUNTEERS AND IMPACT. WE INITIATED AND ADVANCED 360I, MOVING THE INDUSTRY TOWARD A DYNAMIC AND STANDARDS-DRIVEN DATA FLOW WITH OVER 80+ CONTRIBUTORS LEADING TEAMS (DESIGN, BUILD, AND RUN), INNOVATION CHALLENGES, AND ROUNDTABLES TO SHAPE THE FUTURE OF CLINICAL RESEARCH. THE DESIGN TEAM DEVELOPED DETAILED USER STORIES SPANNING FROM STUDY DESIGN THROUGH STUDY AMENDMENT AND DEMONSTRATED THE ABILITY TO LEVERAGE THE DIGITAL PROTOCOL TO AUTOMATE DOWNSTREAM. A KEY ACHIEVEMENT WAS EMBEDDING CONFORMANCE CONSIDERATIONS FROM THE OUTSET, USING CORE AND CDISC OPEN RULES TO ENSURE STANDARDS CONFORMANCE THROUGHOUT THE LIFECYCLE. THE BUILD TEAM SUCCESSFULLY GENERATED DEFINE.XML AND SHELL DATASETS FROM THE DIGITAL PROTOCOL IDENTIFYING THE METADATA NEEDED FOR AUTOMATION. THE RUN TEAM DEMONSTRATED THE ABILITY TO PROCESS DATA FROM A WIDE RANGE OF SOURCES (E.G., CRF, FHIR RWD, DHT) AND LEVERAGING OPEN SOURCE TOOLS TO AUTOMATE THE GENERATION OF SDTM DATA SETS FROM UPSTREAM DIGITAL STUDY DESIGN INFORMATION. STRATEGIC COLLABORATIONS STRENGTHENED THIS MOMENTUM, SUPPORTING MODERNIZATION, EXPANDING DIGITAL STANDARDS, AND IMPROVING INTEROPERABILITY ACROSS STUDY STARTUP AND DATA EXCHANGE. OUR EVENTS AND EDUCATION OFFERINGS ALSO SAW STRONG ENGAGEMENT, BUILDING SKILLS, EXPANDING UNDERSTANDING, AND FOSTERING DEEPER ALIGNMENT ACROSS THE COMMUNITY.2025 TECHNICAL MILESTONES: -AI INNOVATION CHALLENGE LAUNCHED TO GALVANIZE GLOBAL INNOVATORS TO ADVANCE THE DIGITIZATION AND AUTOMATION OF CLINICAL RESEARCH THROUGH AI, ML, AND CDISC STANDARDS. WITH 22 SUBMISSIONS ACROSS THREE TECHNICALLY COMPLEX USE CASES, THE CHALLENGE DELIVERED PRACTICAL, STANDARDS-DRIVEN SOLUTIONS THAT STRENGTHEN INTEROPERABILITY, ACCELERATE DIGITAL PROTOCOL DEVELOPMENT, AND ENABLE END-TO-END TRACEABILITY. -CDISC OPEN SOURCE ALLIANCE (COSA) PARTNERED ACROSS THE GLOBAL COMMUNITY MET QUARTERLY THROUGHOUT THE YEAR TO SHOWCASE THEIR OPEN-SOURCE SOLUTIONS INCLUDING HACKATHONS AND MORE THAN 15 OPEN SOURCE SOLUTION DEMOS AND 8 OSS ADDITIONS TO THE REPOSITORY. -TECHNOLOGY VENDOR ROUNDTABLE INITIATED TO BRING TOGETHER CDISC MEMBERS FOCUSING ON TECHNOLOGY SOLUTIONS IN A COLLABORATIVE ENVIRONMENT TO SUPPORT CDISC'S DIGITAL TRANSFORMATION. PARTICIPANTS DISCUSSED THE FUTURE OF CLINICAL TRIAL INNOVATION BY ENSURING THAT CDISC STANDARDS ARE PRACTICAL AND IMPLEMENTABLE IN MODERN DIGITAL WORKFLOWS. IT SUPPORTS THE BROADER 360I INITIATIVE BY HELPING VENDORS AND DEVELOPERS DISCUSS TOOLS THAT INTEGRATE SEAMLESSLY WITH CDISC'S STRUCTURED METADATA AND DIGITAL PROTOCOL MODELS. -TMF MARKED A MAJOR MILESTONE AS IT BECAME THE OFFICIAL CDISC TMF STANDARD, TRANSFORMING TMF RM V4 INTO VERSION 1 OF A UNIFIED, INTEROPERABLE FRAMEWORK FOR CLINICAL TRIAL DOCUMENTATION. ADDITIONALLY, THE GLOBAL TMF COMMUNITY ADVANCED INTO THE COLLABORATIVE CDISC TMF COMMUNITY, EMBRACING A DATA-DRIVEN, MACHINE-READABLE FUTURE THAT WILL ENABLE DECENTRALIZED TRIALS, REAL-TIME OVERSIGHT, AND STREAMLINED COMPLIANCE -UNIFIED STUDY DEFINITIONS MODEL V4.0 INCLUDES AN IMPLEMENTATION GUIDE, LOGICAL MODEL, CONTROLLED TERMINOLOGY, API SPECIFICATIONS, CONFORMANCE RULES TO SUPPORT USAGE OF USDM. USDM V3.0 CONFORMANCE RULE SPECS PROVIDES THE TECHNICAL GUIDANCE USED TO ASSERT THAT ANY GIVEN STUDY DEFINITION SOLUTION CONFORMS TO USDM V3.0. -CARDIAC IMAGING SUPPLEMENT TO THE DUCHENNE MUSCULAR DYSTROPHY TA USER GUIDE V1.0 DEVELOPED IN PARTNERSHIP WITH THE C-PATH DUCHENNE REGULATORY SCIENCE CONSORTIUM (D-RSC), THE SUPPLEMENT TO THE DMD TAUG INCLUDES NEW CONTROLLED TERMINOLOGY, AND SDTM AND ADAM EXAMPLES FOR CARDIOVASCULAR TESTS. -DEFINE-XML V2.1.8 & V2.1.9 RELEASES INCLUDES THE DEFINE-ENUMERATIONS SCHEMA FILE THAT REFLECTS THE RELEASE OF CT P59. -CDISC OPEN RULES ENGINE (CORE) V0.14.0 ENABLES JSONATA RULES (USDM CONFORMANCE RULES). -CT RELATIONSHIPS V1.0 FOR SDTM V1.7, SDTMIG V3.3, SDTMIG-MD V1.1 DEFINES RELATIONSHIPS BETWEEN PUBLISHED CT CODELISTS/TERMINOLOGY SUBSETS AND THE CDISC VARIABLES, TESTS, PARAMETERS, AND NON-STANDARD VARIABLES (NSVS) PUBLISHED IN SDTMIGS, TAUGS, AND REGULATORY DOCUMENTS. -BIOMEDICAL CONCEPTS BROWSER ALLOWS USERS TO EFFICIENTLY SEARCH, FILTER, AND LOCATE THE LATEST BCS AND SDTM DATASET SPECIALIZATIONS IN THE CDISC LIBRARY. -QRS PORTAL FEATURES QRS PACKAGES OF MACHINE-READABLE CONTENT INCLUDING BCS, SDTM CT, SDTM DATASET SPECIALIZATIONS, AND ODM FILES; 2 PACKAGES RELEASED; 18 QRS SUPPLEMENTS RELEASED. -ECRF PORTAL CONSISTS OF READY-TO-USE, CDASH-COMPLIANT, ANNOTATED ECRFS, AVAILABLE IN PDF, HTML AND XML FORMATS
- $603,022 spent. EDUCATION - IN 2025 CDISC EDUCATION TRAINED 800 INDIVIDUALS WITH EXPANDED EDUCATION OFFERINGS INCLUDING 8 NEW TRAININGS, EQUIPPING THE GLOBAL CDISC COMMUNITY WITH PRACTICAL TOOLS AND KNOWLEDGE TO IMPLEMENT STANDARDS MORE EFFECTIVELY. INSTRUCTORS LED 77 TRAININGS FOR TRAINEES FROM 130+ ORGANIZATIONS REPRESENTING 35 COUNTRIES.
- $857,770 spent. EVENTS - CDISC HELD 7 GLOBAL EVENTS (UNITED STATES, SWITZERLAND, JAPAN, CHINA, KOREA AND INDIA) ACROSS THREE CONTINENTS WITH MORE THAN 1,400+ ATTENDEES FOSTERED COLLABORATION AND KNOWLEDGE SHARING ACROSS THE CLINICAL RESEARCH COMMUNITY GATHERING TO NETWORK, SHARE THEIR EXPERTISE, BEST PRACTICES, AND LESSONS LEARNED ABOUT LEVERAGING CDISC STANDARDS TO BRING EFFICIENCIES AND CLARITY TO DATA. 2025 BROUGHT TOGETHER PROFESSIONALS FROM A WIDE RANGE OF ROLES, INCLUDING MANAGERS, DIRECTORS, OPERATIONS EXPERTS, AND EXECUTIVES. THIS DIVERSE ATTENDEE BASE REFLECTS OUR ABILITY TO ENGAGE LEADERS AND PRACTITIONERS ALIKE, FOSTERING MEANINGFUL DIALOGUE AND COLLABORATION ACROSS ALL LEVELS OF THE INDUSTRY. ATTENDEES PARTICIPATED FROM VARIOUS ORGANIZATIONS IN PHARMACEUTICAL, CRO, TECHNOLOGY, ACADEMIC AND RESEARCH INSTITUTIONS. CDISC ALSO SUPPORTED EXTERNAL EVENTS THROUGHOUT THE YEAR WITH OUR PARTNER ORGANIZATIONS.
- $14,310 spent. PARTNERSHIPS & COLLABORATION CDISC HAS OVER 400 MEMBER ORGANIZATIONS ACROSS 27 COUNTRIES. OUR IMPACT AS AN ORGANIZATION IS MULTIPLIED BY OUR COLLABORATIONS WITH OUR GLOBAL PARTNERS INCLUDING REGULATORY AGENCIES AND PATIENT FOUNDATIONS. THROUGH PARTNERSHIP, WE CAN CONTINUE TO ADVANCE INTEROPERABLE STANDARDS ACROSS A WIDE RANGE OF THERAPEUTIC AREAS SO GREATER CLARITY IS ACHIEVED, MORE POWERFUL RESEARCH IS CONDUCTED, AND MORE MEANINGFUL CONNECTIONS ARE DISCOVERED. AND AS OUR DEDICATION AND COLLABORATION CONTINUE TO GROW, SO TOO WILL OUR COLLECTIVE IMPACT ON GLOBAL HEALTH.
Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since November 2011.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.
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