Form 990 for tax year 2025

Totals

Total revenue

$8,901,903

Total expenses

$8,480,440

Contributions and grants received

$4,581,730

Grants paid

$0

Program service revenue

$4,289,736

Investment income

$30,437

Other revenue

$0

Total assets, end of year

$3,998,049

Total liabilities, end of year

$2,221,453

Net assets or fund balances, end of year

$1,776,596

Program services expenses (Part IX)

$6,104,185

Management and general expenses

$1,992,655

Fundraising expenses

$383,600

Program service expenses (Part III)

$6,104,185

Program services were 72.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2025

• 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

  Expenses $4,629,083 · Revenue $280,038

• 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.

  Expenses $603,022 · Revenue $865,958

• 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.

  Expenses $857,770 · Revenue $1,171,028

• 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.

  Expenses $14,310 · Revenue $1,972,712

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

• CDISC EUROPE FOUNDATION

  RESEARCH · BE

  Directly controlled by CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM

Provenance

Return type

form_990

Tax year

2025

Filed

27 July 2026

IRS schema version

2025v4.2

Source object

202632129349300243

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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