Totals
- Total revenue
- $6,896,288
- Total expenses
- $6,100,502
- Contributions and grants received
- $3,326,823
- Grants paid
- $47,778
- Program service revenue
- $3,475,356
- Investment income
- $94,109
- Other revenue
- $0
- Total assets, end of year
- $10,639,471
- Total liabilities, end of year
- $1,451,137
- Net assets or fund balances, end of year
- $9,188,334
- Program services expenses (Part IX)
- $5,271,091
- Management and general expenses
- $531,907
- Fundraising expenses
- $297,504
- Program service expenses (Part III)
- $5,271,091
Program services were 86.4% 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.
-
1e · Government grants (contributions)
$452,706
-
1f · All other contributions, gifts and grants
$2,874,117
-
2a · Program service revenue: MEMBERSHIP DUES
total $2,849,515 · related or exempt $2,849,515
-
2b · Program service revenue: MEMBERSHIP SERVICE FEE
total $625,841 · related or exempt $625,841
-
3 · Investment income
total $94,109 · excluded $94,109
Functional expenses
Part IX, the statement of functional expenses.
-
2 · Grants to domestic individuals
total $5,000 · program services $5,000
-
3 · Grants to foreign organizations and individuals
total $42,778 · program services $42,778
-
5 · Compensation of officers, directors and key employees
total $665,845 · program services $427,532 · management and general $144,369 · fundraising $93,944
-
7 · Other salaries and wages
total $941,013 · program services $849,412 · management and general $457 · fundraising $91,144
-
8 · Pension plan contributions
total $59,280 · program services $52,297 · management and general $1,240 · fundraising $5,743
-
9 · Other employee benefits
total $85,292 · program services $69,867 · management and general $5,719 · fundraising $9,706
-
10 · Payroll taxes
total $98,324 · program services $78,207 · management and general $8,603 · fundraising $11,514
-
11b · Fees: legal
total $3,364 · program services $3,364
-
11c · Fees: accounting
total $283,926 · management and general $283,926
-
11g · Fees: other
total $297,537 · program services $297,537
-
12 · Advertising and promotion
total $56,400 · program services $38,139 · fundraising $18,261
-
13 · Office expenses
total $26,775 · program services $23,387 · management and general $1,450 · fundraising $1,938
-
14 · Information technology
total $1,608,985 · program services $1,608,985
-
17 · Travel
total $102,197 · program services $48,208 · management and general $11,998 · fundraising $41,991
-
22 · Depreciation, depletion and amortization
total $1,559,032 · program services $1,556,270 · management and general $586 · fundraising $2,176
-
23 · Insurance
total $10,377 · program services $8,246 · management and general $918 · fundraising $1,213
-
24a · Other expenses: DATA LICENSES
total $170,020 · program services $135,098 · management and general $15,048 · fundraising $19,874
-
24b · Other expenses: RECRUITING EXPENSE
total $75,739 · program services $26,764 · management and general $48,975
-
24c · Other expenses: BANK CHARGES & FEES
total $8,106 · management and general $8,106
-
24d · Other expenses: STATE FILING FEES
total $512 · management and general $512
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,687,426 · end of year $1,955,889
-
2 · Savings and temporary cash investments
beginning of year $2,411,367 · end of year $2,795,080
-
3 · Pledges and grants receivable
beginning of year $623,633 · end of year $764,546
-
4 · Accounts receivable
beginning of year $255,014 · end of year $509,566
-
9 · Prepaid expenses and deferred charges
beginning of year $37,252 · end of year $61,331
-
10a · Land, buildings and equipment: cost or other basis
$36,601
-
10b · Land, buildings and equipment: accumulated depreciation
$24,188
-
10c · Land, buildings and equipment, net
beginning of year $5,299 · end of year $12,413
-
14 · Intangible assets
beginning of year $4,920,332 · end of year $4,540,646
-
17 · Accounts payable and accrued expenses
beginning of year $635,249 · end of year $591,196
-
19 · Deferred revenue
beginning of year $932,626 · end of year $859,941
-
27 · Net assets without donor restrictions
beginning of year $8,316,672 · end of year $8,494,172
-
28 · Net assets with donor restrictions
beginning of year $55,776 · end of year $694,162
Mission and programs · 2024
Mission
TO PROMOTE, COORDINATE, AND FACILITATE SCIENTIFIC SHARING AND REUSE OF CLINICAL RESEARCH DATA THROUGH THE CREATION AND IMPLEMENTATION OF A SUSTAINABLE GLOBAL DATA-SHARING ENTERPRISE
-
THE ORGANIZATION HAS ESTABLISHED AND LAUNCHED AN INDEPENDENT DATA REPOSITORY ANALYTICS PLATFORM AND AN IN-DEPTH SEARCH ENGINE THROUGH WHICH INDIVIDUAL PARTICIPANT-LEVEL DATA (IPD) AND METADATA FROM CLINICAL TRIALS CONDUCTED BY RESEARCHERS IN ACADEMIA, INDUSTRY, FOUNDATION, AND NON-PROFIT ENTITIES CAN BE IDENTIFIED, HOSTED, SHARED, AND ANALYZED. THE ORGANIZATION DERIVES ITS PRIMARY REVENUE FROM SUBSCRIPTION FEES AND ALSO IS SUPPORTED FROM GRANTS AND CONTRIBUTIONS FROM MEMBERS AND PRIVATE FOUNDATIONS.
Expenses $5,271,091 · Grants $47,778 · Revenue $3,475,356
As filed on the 2024 return.
Listed in Part VII
-
Barbara BiererBARBARA BIERER
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Rebecca LiREBECCA LI
CEO/CLERK/DIRECTOR
- Total calculated
- $418,856
- From this org
- $360,774
- From related orgs
- $0
- Other
- $58,082
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $360,000
- Bonus
- $0
- Other
- $774
- Deferred
- $20,700
- Nontaxable benefits
- $37,382
- Filer's total
- $418,856
-
Michael StebbinsMICHAEL STEBBINS
BOARD CHAIR/DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Murray StewartMURRAY STEWART
TREASURER/DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Ida SimIDA SIM
DIRECTOR/CONSULTANT
- Total calculated
- $39,000
- From this org
- $39,000
- From related orgs
- $0
- Other
- $0
- Hours/week
- 1
-
Steven E KernSTEVEN E KERN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Subha MadhavanSUBHA MADHAVAN
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Brian McCourtBRIAN MCCOURT
DIRECTOR
- Total calculated
- $0
- Hours/week
- 1
-
Julie WoodJULIE WOOD
COO
- Total calculated
- $253,429
- From this org
- $216,854
- From related orgs
- $0
- Other
- $36,575
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $216,584
- Bonus
- $0
- Other
- $270
- Deferred
- $12,995
- Nontaxable benefits
- $23,580
- Filer's total
- $253,429
-
Stanley Neumann - SeniorSTANLEY NEUMANN - SENIOR
DIRECTOR OF TECHNICAL OPERATIONS
- Total calculated
- $267,958
- From this org
- $193,562
- From related orgs
- $0
- Other
- $74,396
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $189,854
- Bonus
- $0
- Other
- $3,708
- Deferred
- $12,059
- Nontaxable benefits
- $62,337
- Filer's total
- $267,958
-
Irene TroupanskyIRENE TROUPANSKY
SENIOR SOFTWARE ARCHITECT
- Total calculated
- $218,281
- From this org
- $184,186
- From related orgs
- $0
- Other
- $34,095
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $181,900
- Bonus
- $0
- Other
- $2,286
- Deferred
- $10,948
- Nontaxable benefits
- $23,147
- Filer's total
- $218,281
-
William O'NeilWILLIAM O'NEIL
PRINCIPAL SOFTWARE ENGINEER
- Total calculated
- $205,028
- From this org
- $171,220
- From related orgs
- $0
- Other
- $33,808
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $167,512
- Bonus
- $0
- Other
- $3,708
- Deferred
- $10,085
- Nontaxable benefits
- $23,723
- Filer's total
- $205,028
-
Robert ConklinROBERT CONKLIN
CHIEF TECHNICAL OFFICER
- Total calculated
- $127,781
- From this org
- $100,349
- From related orgs
- $0
- Other
- $27,432
- Hours/week
- 40
-
Catherine D'ArcyCATHERINE D'ARCY
ASSOCIATE DIRECTOR OF OPERATIONS
- Total calculated
- $171,373
- From this org
- $137,852
- From related orgs
- $0
- Other
- $33,521
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $137,852
- Bonus
- $0
- Other
- $0
- Deferred
- $0
- Nontaxable benefits
- $33,521
- Filer's total
- $171,373
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 · Written employment contract
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 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
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.
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 5 November 2025
- IRS schema version
- 2024v5.2
- Source object
- 202533109349301623
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