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Nonprofiteer
← CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC

Form 990 for tax year 2023

Filed by CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC.

Totals

Total revenue
$9,333,128
Total expenses
$11,224,779
Contributions and grants received
$4,791,339
Grants paid
$0
Program service revenue
$4,513,613
Investment income
$28,176
Other revenue
$0
Total assets, end of year
$3,979,569
Total liabilities, end of year
$2,300,927
Net assets or fund balances, end of year
$1,678,642
Program services expenses (Part IX)
$8,381,080
Management and general expenses
$2,053,222
Fundraising expenses
$790,477
Program service expenses (Part III)
$8,381,080

Program services were 74.7% 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.

Revenue

Part VIII, the statement of revenue.

  • 1b · Membership dues

    $2,952,817

  • 1e · Government grants (contributions)

    $448,785

  • 1f · All other contributions, gifts and grants

    $1,389,737

  • 2a · Program service revenue: P'SHIP & COLLABORATION

    total $1,968,544 · related or exempt $1,968,544

  • 2b · Program service revenue: EDUCATION COURSES

    total $1,249,309 · related or exempt $1,249,309

  • 2c · Program service revenue: CONFERENCE REVENUE

    total $1,122,397 · related or exempt $1,122,397

  • 2d · Program service revenue: TECHNICAL PROJECTS

    total $123,553 · related or exempt $123,553

  • 2e · Program service revenue: ODM DATA COLLECTION

    total $49,810 · related or exempt $49,810

  • 3 · Investment income

    total $28,176 · excluded $28,176

Functional expenses

Part IX, the statement of functional expenses.

  • 5 · Compensation of officers, directors and key employees

    total $1,300,846 · program services $562,179 · management and general $472,306 · fundraising $266,361

  • 7 · Other salaries and wages

    total $4,696,761 · program services $3,727,272 · management and general $800,024 · fundraising $169,465

  • 8 · Pension plan contributions

    total $191,736 · program services $179,491 · management and general $12,245

  • 9 · Other employee benefits

    total $498,370 · program services $280,007 · management and general $170,263 · fundraising $48,100

  • 10 · Payroll taxes

    total $418,387 · program services $301,210 · management and general $86,924 · fundraising $30,253

  • 11b · Fees: legal

    total $2,500 · management and general $2,500

  • 11c · Fees: accounting

    total $65,905 · management and general $65,905

  • 11g · Fees: other

    total $2,181,080 · program services $1,774,410 · management and general $195,150 · fundraising $211,520

  • 13 · Office expenses

    total $63,762 · program services $4,249 · management and general $57,798 · fundraising $1,715

  • 14 · Information technology

    total $221,813 · program services $149,483 · management and general $53,042 · fundraising $19,288

  • 16 · Occupancy

    total $135,054 · program services $70,956 · management and general $44,076 · fundraising $20,022

  • 17 · Travel

    total $166,224 · program services $156,753 · management and general $7,540 · fundraising $1,931

  • 19 · Conferences, conventions and meetings

    total $14,058 · management and general $14,058

  • 22 · Depreciation, depletion and amortization

    total $31,129 · program services $21,472 · management and general $6,886 · fundraising $2,771

  • 24a · Other expenses: EVENTS

    total $587,708 · program services $580,692 · management and general $1,884 · fundraising $5,132

  • 24b · Other expenses: INSTRUCTION

    total $466,156 · program services $466,156

  • 24c · Other expenses: MISCELLANEOUS

    total $149,368 · program services $106,750 · management and general $28,699 · fundraising $13,919

  • 24d · Other expenses: TRAININGS

    total $19,185 · management and general $19,185

  • 24e · All other expenses

    total $14,737 · management and general $14,737

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $491,040 · end of year $1,219,676

  • 2 · Savings and temporary cash investments

    beginning of year $2,340,943 · end of year $1,163,483

  • 3 · Pledges and grants receivable

    beginning of year $656,782 · end of year $62,590

  • 4 · Accounts receivable

    beginning of year $494,864 · end of year $505,090

  • 9 · Prepaid expenses and deferred charges

    beginning of year $212,697 · end of year $130,625

  • 10a · Land, buildings and equipment: cost or other basis

    $213,806

  • 10b · Land, buildings and equipment: accumulated depreciation

    $161,050

  • 10c · Land, buildings and equipment, net

    beginning of year $62,225 · end of year $52,756

  • 11 · Investments: publicly traded securities

    beginning of year $827,150 · end of year $845,349

  • 17 · Accounts payable and accrued expenses

    beginning of year $578,684 · end of year $868,188

  • 19 · Deferred revenue

    beginning of year $886,724 · end of year $1,332,739

  • 25 · Other liabilities

    beginning of year $50,000 · end of year $100,000

  • 27 · Net assets without donor restrictions

    beginning of year $3,466,220 · end of year $1,678,642

  • 28 · Net assets with donor restrictions

    beginning of year $104,073 · end of year $0

Mission and programs · 2023

Mission

TO DEVELOP AND SUPPORT GLOBAL, PLATFORM-INDEPENDENT DATA STANDARDS THAT ENABLE INFORMATION SYSTEM INTEROPERABILITY TO IMPROVE MEDICAL RESEARCH AND RELATED AREAS OF HEALTHCARE.

Activities or mission (Part I)

THE CDISC MISSION IS TO DEVELOP AND SUPPORT GLOBAL, PLATFORM-INDEPENDENT DATA STANDARDS THAT ENABLE INFORMATION SYSTEM INTEROPERABILITY TO IMPROVE MEDICAL RESEARCH AND RELATED AREAS OF HEALTHCARE.

  • TECHNICAL - TO DATE, CDISC HAS DEVELOPED THERAPEUTIC AREA STANDARDS FOR OVER 44 DISEASE AREAS AND WE CONTINUE TO UPDATE AND EXPAND THESE STANDARDS WHEN POSSIBLE. IN 2023, CDISC CONTINUES TO DEVELOP SIGNIFICANT NEW VERSIONS OF THE CDISC FOUNDATIONAL STANDARDS (SEND, CDASH, SDTM, SDTMIG, ADAM, CONTROLLED TERMINOLOGY AND DATA EXCHANGE STANDARDS). THE TRIAL MASTER FILE REFERENCE MODEL (TMF RM) STANDARD HAS BECAME PART OF THE CDISC SUITE OF STANDARDS.CDISC RELEASED SEVERAL UPDATES TO THE CDISC LIBRARY TO ADD NEW FEATURES AS WELL AS NEW VERSIONS OF THE STANDARDS. CDISC CORE RULE ENGINE AND RULE EDITOR SOFTWARE HAS RELEASED AS OPEN SOURCE AND THE TEAM CONTINUES TO MAKE PROGRESS. FOR THE CDISC THE DIGITAL DATA FLOW PROJECT WE REALEASED A REFERENCE ARCHITECTURE AS A STANDARD AND ARE WORKING ON VERSION 3. CDISC CONTINUES TO RUN NUMEROUS HACKATHONS AND WORKSHOPS TO PROMOTE, SUPPORT, AND SOMETIMES SPONSOR OPEN-SOURCE SOFTWARE FOCUSED ON IMPLEMENTING OR DEVELOPING THE CDISC STANDARDS TO DRIVE INNOVATION.

    Expenses $5,892,541 · Revenue $123,553

  • EDUCATION - IN 2023, CDISC EDUCATION HELD THE MOST LIVE ON-LINE TRAINING EVENTS IN PROGRAM HISTORY WITH OVER 130 VIRTUAL TRAINING EVENTS LED THROUGHOUT THE YEAR AND OVER 1200 VIRTUAL ATTENDEES. THE EDUCATION TEAM MIGRATED TO A NEW E-COMMERCE SYSTEM AND UPGRADED THE CDISC LEARNING SYSTEM TO THE LATEST VERSION FOR THE FIRST TIME SINCE 2018, ALLOWING FOR EASIER ACCESS AND NEW LEARNING TOOLS FOR THE CDISC COMMUNITY.

    Expenses $1,126,904 · Revenue $1,249,309

  • EVENTS - CDISC HOSTED THREE VIRTUAL AND ONE IN-PERSON CONFERENCE IN 2023. THESE CONFERENCES WERE "INTERCHANGES," INDIVIDUALLY FOCUSED ON EUROPE, JAPAN, CHINA AND UNITED STATES MARKETS. THE EVENTS PROMOTED RECENT ADVANCEMENTS BY CDISC STANDARDS TEAMS, CDISC MEMBERS AND INDEPENDENT DEVELOPERS. ATTENDEES CAME FROM VARIOUS ORGANIZATIONS IN PHARMACEUTICAL, CRO, TECHNOLOGY, ACADEMIC AND BIOTECH SECTORS. CDISC ALSO SUPPORTED NON-CDISC EVENTS THROUGHOUT THE YEAR TO FURTHER PROMOTE THE AIMS OF THE ORGANIZATION TO THE BROADER CLINICAL RESEARCH COMMUNITY.

    Expenses $861,807 · Revenue $1,122,397

  • PARTNERSHIPS & COLLABORATION - CDISC HAS OVER 530 ACTIVE MEMBERORGANIZATIONS. OUR MEMBERS' SUPPORT ENSURES THAT THE CDISC STANDARDSREMAIN OPEN AND FREE. MEMBERSHIP DUES ALLOW CDISC TO ACCOMPLISH THEPROGRAM SERVICES MENTIONED ABOVE. CDISC ALSO WORKS CLOSELY WITHREGULATORS AROUND THE WORLD TO ENSURE THAT CDISC STANDARDS FACILITATETHE E-SUBMISSION REVIEW PROCESS AND SUPPORT THE APPROVAL OF NEW CURESAND TREATMENTS.

    Expenses $499,828 · Revenue $2,018,354

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Erik Pulkstenis

    CHAIR

    Total calculated
    $0
    Hours/week
    2

  • Chris Decker

    CHAIR-ELECT

    Total calculated
    $0
    Hours/week
    2

  • Pam Howard

    PAST-CHAIR

    Total calculated
    $0
    Hours/week
    2

  • Christina Reith

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Mihoko Okada

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Wenjun Bao

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Jonathan Chainey

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Karen Curran

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • David Hardison

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Brooke Hinkson

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Pandu Kulkarni

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Dominic Labriola

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Lisa Lin

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Hiroshi Masumoto

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Rhona O'Donnell

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • David E Evans

    PRESIDENT & CEO

    Total calculated
    $472,306
    From this org
    $423,735
    From related orgs
    $0
    Other
    $48,571
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $354,835
    Bonus
    $68,900
    Other
    $0
    Deferred
    $19,800
    Nontaxable benefits
    $28,771
    Filer's total
    $472,306

  • Rhonda Facile

    VP, DEVELOPMENT & PARTNERSHIPS

    Total calculated
    $277,803
    From this org
    $238,070
    From related orgs
    $0
    Other
    $39,733
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $200,070
    Bonus
    $38,000
    Other
    $0
    Deferred
    $11,400
    Nontaxable benefits
    $28,333
    Filer's total
    $277,803

  • Sheila Leaman

    VP GLOBAL RELATIONS

    Total calculated
    $280,645
    From this org
    $238,070
    From related orgs
    $0
    Other
    $42,575
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $200,070
    Bonus
    $38,000
    Other
    $0
    Deferred
    $14,284
    Nontaxable benefits
    $28,291
    Filer's total
    $280,645

  • Sam Hume

    VP DATA SCIENCE

    Total calculated
    $270,092
    From this org
    $229,556
    From related orgs
    $0
    Other
    $40,536
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $190,970
    Bonus
    $38,586
    Other
    $0
    Deferred
    $12,189
    Nontaxable benefits
    $28,347
    Filer's total
    $270,092

  • Peter Van Reusel

    CHIEF STANDARDS OFFICER

    Total calculated
    $302,748
    From this org
    $302,748
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $255,361
    Bonus
    $47,387
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $302,748

  • Charles Shadle

    HEAD OF DATA SCIENCE OPERATIONS

    Total calculated
    $204,211
    From this org
    $187,581
    From related orgs
    $0
    Other
    $16,630
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $172,211
    Bonus
    $15,370
    Other
    $0
    Deferred
    $11,471
    Nontaxable benefits
    $5,159
    Filer's total
    $204,211

  • Amy Palmer

    HEAD OF STANDARDS DEVELOPMENT

    Total calculated
    $198,058
    From this org
    $174,463
    From related orgs
    $0
    Other
    $23,595
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $159,093
    Bonus
    $15,370
    Other
    $0
    Deferred
    $10,468
    Nontaxable benefits
    $13,127
    Filer's total
    $198,058

  • Bess Leroy Nieto

    HEAD OF STANDARDS DEVELOPMENT

    Total calculated
    $205,277
    From this org
    $176,755
    From related orgs
    $0
    Other
    $28,522
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $161,385
    Bonus
    $15,370
    Other
    $0
    Deferred
    $9,013
    Nontaxable benefits
    $19,509
    Filer's total
    $205,277

  • Christine Connolly

    HEAD OF STANDARDS PROJECTS

    Total calculated
    $192,286
    From this org
    $176,755
    From related orgs
    $0
    Other
    $15,531
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $161,385
    Bonus
    $15,370
    Other
    $0
    Deferred
    $10,821
    Nontaxable benefits
    $4,710
    Filer's total
    $192,286

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

Answered yes

  • 3 · Compensation committee
  • 3 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 5a · Pay contingent on this organization's revenues

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 5
THE ORGANIZATION HAS A THREE-YEAR AGREEMENT WITH DAVID EVANS, CEO, FOR PERFORMANCE-BASED BONUSES BASED ON THE FINANCIAL CONDITION OF THE ORGANIZATION, AS DEFINED IN THE CONTRACT. THE BONUSES WILL BE PAID IN 2024 AT THE CONCLUSION OF THE 2023 AUDIT. AS OF DECEMBER 31, 2023, THE ORGANIZATION HAS RECOGNIZED $100,000 UNDER THIS AGREEMENT, WHICH IS REFLECTED AS DEFERRED COMPENSATION.

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
2023
Filed
13 August 2024
IRS schema version
2023v5.1
Source object
202402289349300805

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