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

501(c)(3) charity; gifts are tax-deductible.
89¢ of each $1 spent went to programs.
$828K paid to officers and key staff.
Mission: Form 990 Part I, line 1 · Status: IRS Pub. 78 · Programs: Part IX · Pay: Part VII

Before you give

FY2022 · Form 990Independent: from IRS data, not the org
Download 990
IRS status
501(c)(3)
not on the IRS revocation list
Looks good: listed by the IRS and not on the revocation list.
IRS BMF · Auto-Revocation List
Tax-deductible gifts
Yes
Donations are tax-deductible
Looks good: the IRS lists gifts to it as deductible.
IRS Pub. 78 · IRS BMF
Latest return
FY2024
latest Form 990
Looks good: the latest return is for FY2024, 2 tax years back; within 2 tax years.
IRS e-file · Filing history
Surplus or deficit
5 of 5
filings with a surplus
Average surplus $1.2M a year · 24% of revenue · last 5 filings
Looks good: a surplus in 5 of the last 5 filings.
Pt I · Ln 19 · 5 filings
Spent on programs
89%
of spending
Looks good: 89% of spending went to programs; 75% or more.
Pt IX · Ln 25 · col B
Pay to officers and key staff
$828K
to officers and key staff · 21% of spending
Worth a look: pay to officers and key staff is 21% of spending; over 20%.
Pt VII · Sec A
9 mo
of spending, in cash
Looks good: 8.7 months of spending in cash; 3 or more.
Pt X · Ln 1–2 · Pt I · Ln 18
Named funders
2
named funders · $648K
Fine: 2 funders name it on their filings; under 3.
Funders’ Sch. I, 990-PF
Liabilities
$1.3M
14% of total assets
Looks good: liabilities are 14% of assets; 50% or less.
Pt X · Ln 26
Independent board members
4
of 6 voting members
Looks good: 4 of 6 voting members are independent, a majority.
Pt VI · Ln 1a–1b
Looks goodFineWorth a lookConcernNo data yetTap a box for the reason.
Revenue
$5.2M
-14% vs prior year
Spent
$4.0M
To programs
89%
Net assets
$8.0M
By yearFY2020–FY2024
Revenue
$5.2M
FY2022▼ -14%
Tap a bar for its year
Revenue by fiscal year
FY2020$2.8M
FY2021$6.0M
FY2022$5.2M
FY2023$5.2M
FY2024$6.9M
Expenses
$4.0M
FY2022▲ +39%
Tap a bar for its year
Expenses by fiscal year
FY2020$2.1M
FY2021$2.9M
FY2022$4.0M
FY2023$4.8M
FY2024$6.1M
Net assets
$8.0M
FY2022▲ +17%
Tap a bar for its year
Net assets by fiscal year
FY2020$3.7M
FY2021$6.8M
FY2022$8.0M
FY2023$8.4M
FY2024$9.2M

From the FY2022 Form 990 · figures checked against the IRS filing · see the original

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You’re viewing the FY2022 filing — not the latest on file. See the latest (FY2024) →

Is it real?

Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 2017.

IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File

Where the money goes

89 cents of each dollar spent went to programs.

Program services 89% · $3.6M Management & general 8% · $316K Fundraising 4% · $145K

Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.

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Who runs it and what they're paid

10 people listed on the 990; $828K paid to officers and key staff.

Part VII, Section A · reportable compensation
Exec. Dir/Clerk/Director
$266,931Pt VII · Sec A
Senior Director of Strategy & Operations
$180,682Pt VII · Sec A
Director of Technical Oper
$170,906Pt VII · Sec A
Senior Software Architect
$164,528Pt VII · Sec A
Director/Consultant
$45,000Pt VII · Sec A
$0Pt VII · Sec A
Board Chair/Director
$0Pt VII · Sec A
Treasurer/Director
$0Pt VII · Sec A

Rebecca Li’s $361K as CEO/Clerk/Director is at the 93rd percentile of top reported officer pay among 360 $1–10M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.

Compensation history total reportable pay by year · 8 named individuals · Part VII

NameFY2024FY2023FY2022FY2021FY2020
Rebecca Li$360,774$329,493$266,931$252,920$241,914
Julie Wood$216,854$194,303$180,682$168,094$162,063
Stanley Neumann - Senior$193,562————
Stanley Neumann—$187,951$170,906$165,005$161,822
Irene Troupansky$184,186$177,901$164,528——
William O'Neil$171,220$165,860———
Catherine D'Arcy$137,852——$102,463—
Robert Conklin$100,349————

Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.

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Questions the 990 asks

The form asks each of these directly. These are the filed answers.

  • Family or business ties among officersPt VI · Ln 2No
  • Top official's pay set by an independent reviewPt VI · Ln 15aYes

Programs and updates

Facilitates global sharing and reuse of clinical research data for scientific advancement.

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Provided by the organization

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1 program · $3.6M · in their own filed words · FY2022
01

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…

$3.6Mprogram expense

Funders

Who pays for it.

From grant filings on record. Receipts are incomplete: individual donors are never listed.

Grants

Schedule I · funders on record
Grants received · FY2024
Total grants receivedfrom 2 funders$648K

By the numbers

The FY2022 990, line by line.

1The main four
Money inPt VIII
$5.2M
Ln 12
Fees for servicesLn 2g$2.6M
Gifts and grantsLn 1h$2.6M
Investment incomeLn 3$7K
Money outPt IX
$4.0M
Ln 25
Programscol B$3.6M
Managementcol C$316K
Fundraisingcol D$145K
Owns and owesPt X
$8.0M
net assets · Ln 32
Cash and savingsLn 1–2$2.9M
Total assetsLn 16$9.3M
LiabilitiesLn 26$1.3M
PeoplePt VI, VII
10
listed · VII A
PaidVII A5
Voting boardVI 1a6
IndependentVI 1b4
2In more detail
Revenue in detailPt VIII
Gifts and grantsLn 1h$2.6M
Fees for servicesLn 2g$2.6M
Investment incomeLn 3$7K
Total revenueLn 12$5.2M
Assets in detailPt X, end of year
CashLn 1$1.2M
SavingsLn 2$1.7M
Cash and savings togetherLn 1–2$2.9M
Land, buildings, equipmentLn 10c$10K
Total assetsLn 16$9.3M
LiabilitiesLn 26$1.3M
Net assetsLn 32$8.0M
OperationsPt I, VI
EmployeesI 512
VolunteersI 60
Fiscal year endsHeaderDecember
Conflict-of-interest policyVI 12aYes
Whistleblower policyVI 13Yes
Records policyVI 14Yes
3Year over year
Balance sheet, start vs end of yearPt X · col A, B
LineStart FY22End FY22
Cash and savingsLn 1–2$2.9M$2.9M
Land, buildings, equipmentLn 10c$9K$10K
Total assetsLn 16$8.2M$9.3M
LiabilitiesLn 26$1.4M$1.3M
Net assetsLn 32$6.8M$8.0M
4Every line
Statement of functional expensesPt IX · every line
LineTotalProgramsManagementFundraising
Pay of current officers, directors and key staffLn 5$294K$165K$68K$62K
Other salaries and wagesLn 7$656K$611K$8K$36K
Pension plan contributionsLn 8$28K$26K$418$1K
Other employee benefitsLn 9$72K$59K$6K$7K
Payroll taxesLn 10$59K$48K$5K$6K
Accounting feesLn 11c$218K$218K
Other fees for servicesLn 11g$212K$212K
Advertising and promotionLn 12$25K$15K$9K
Office expensesLn 13$21K$19K$1K$1K
Information technologyLn 14$1.1M$1.1M
TravelLn 17$15K$6K$2K$8K
Depreciation, depletion and amortizationLn 22$1.2M$1.2M$596$5K
InsuranceLn 23$11K$9K$922$1K
Other expenses (24a–d)Ln 24$99K$84K$7K$8K
Total functional expensesLn 25$4.0M$3.6M$316K$145K

Filing history

YearMoney inMoney outIn minus outNet assetsDownload
FY2024 Latest $6.9M$6.1M$796K$9.2M 990 PDF
FY2023 $5.2M$4.8M$405K$8.4M 990 PDF
FY2022 Viewing $5.2M$4.0M$1.2M$8.0M 990 PDF
FY2021 $6.0M$2.9M$3.1M$6.8M 990 PDF
FY2020 $2.8M$2.1M$673K$3.7M 990 PDF

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Schedules filed Part IV

III · Programs R · Related orgs G · Fundraising L · Interested persons I · Grants A · Public support J · Pay O · Explanations
See the full FY2022 990 (6 parts)
Part I · Summary $5,206,066 revenue, 12 lines filed
I-8 Contributions and grantsPrior year $4,010,527$2,561,178
I-9 Program service revenuePrior year $2,019,294$2,638,229
I-10 Investment incomePrior year $351$6,659
I-11 Other revenuePrior year $0$0
I-12 Total revenuePrior year $6,030,172$5,206,066
I-13 Grants and similar amounts paidPrior year $0$0
I-14 Benefits paid to membersPrior year $0$0
I-15 Salaries and benefitsPrior year $874,793$1,108,165
I-16a Professional fundraising feesPrior year $0$0
I-17 Other expensesPrior year $2,021,166$2,923,065
I-18 Total expensesPrior year $2,895,959$4,031,230
I-19 Revenue less expensesPrior year $3,134,213$1,174,836
Part VI · Governance 4 of 6 board members independent, no flags
VI-1a Voting members of the governing body6
VI-1b Independent voting members4
VI-2 Family or business relationship among officers or directorsNo
VI-12a Written conflict of interest policyYes
VI-13 Written whistleblower policyYes
VI-14 Document retention and destruction policyYes
VI-15a Process for setting top official's payYes
Part VIII · Statement of revenue $5,206,066 across 5 lines filed
VIII-1f All other contributions, gifts and grants$2,561,178
VIII-1h Total contributions, gifts and grants$2,561,178
VIII-2a-f Program service revenue, itemized rows (sum of 2a–2f as filed)Related to mission $2,638,229$2,638,229
VIII-3 Investment incomeExcluded from tax $6,659$6,659
VIII-12 Total revenueRelated to mission $2,638,229 · Unrelated business $0 · Excluded from tax $6,659$5,206,066
Part IX · Statement of functional expenses $4,031,230 across 14 lines filed
IX-5 Pay of current officers, directors and key staffPrograms $165,094 · Management $67,846 · Fundraising $61,526$294,466
IX-7 Other salaries and wagesPrograms $611,081 · Management $8,335 · Fundraising $36,091$655,507
IX-8 Pension plan contributionsPrograms $26,006 · Management $418 · Fundraising $1,415$27,839
IX-9 Other employee benefitsPrograms $58,606 · Management $5,579 · Fundraising $7,326$71,511
IX-10 Payroll taxesPrograms $48,485 · Management $4,561 · Fundraising $5,796$58,842
IX-11c Accounting feesManagement $218,240$218,240
IX-11g Other fees for servicesPrograms $212,314$212,314
IX-12 Advertising and promotionPrograms $15,364 · Fundraising $9,421$24,785
IX-13 Office expensesPrograms $19,015 · Management $1,030 · Fundraising $1,331$21,376
IX-14 Information technologyPrograms $1,099,824$1,099,824
IX-17 TravelPrograms $6,033 · Management $1,508 · Fundraising $7,541$15,082
IX-22 Depreciation, depletion and amortizationPrograms $1,215,670 · Management $596 · Fundraising $5,244$1,221,510
IX-23 InsurancePrograms $9,219 · Management $922 · Fundraising $1,193$11,334
IX-24 Other expenses (24a–d)Programs $83,872 · Management $6,811 · Fundraising $7,917$98,600
IX-25 Total functional expensesPrograms $3,570,583 · Management $315,846 · Fundraising $144,801$4,031,230
Part X · Balance sheet $9,263,321 assets, 15 lines filed
X-1 Cash, non-interest-bearingStart of year $1,242,654$1,230,224
X-2 Savings and temporary cash investmentsStart of year $1,688,148$1,699,642
X-3 Pledges and grants receivableStart of year $1,259,545$1,269,226
X-4 Accounts receivableStart of year $77,398$284,742
X-9 Prepaid expenses and deferred chargesStart of year $35,606$56,076
X-10c Land, buildings and equipment, netStart of year $8,526$10,096
X-14 Intangible assetsStart of year $3,868,106$4,713,315
X-16 Total assetsStart of year $8,179,983$9,263,321
X-17 Accounts payable and accrued expensesStart of year $742,655$649,149
X-19 Deferred revenueStart of year $662,168$659,121
X-26 Total liabilitiesStart of year $1,404,823$1,308,270
X-27 Net assets without donor restrictionsStart of year $5,579,262$7,557,922
X-28 Net assets with donor restrictionsStart of year $1,195,898$397,129
X-32 Total net assets or fund balancesStart of year $6,775,160$7,955,051
X-33 Total liabilities and net assetsStart of year $8,179,983$9,263,321
Part XI · Reconciliation of net assets $7,955,051 net assets at year end
XI-1 Total revenue$5,206,066
XI-2 Total expenses$4,031,230
XI-3 Revenue less expenses$1,174,836
XI-4 Net assets at start of year$6,775,160
XI-5 Net unrealized gains (losses) on investments$4,985
XI-9 Other changes in net assets$70
XI-10 Net assets at end of year$7,955,051

Form 990 e-file (XML) FY2022 from the IRS · Classification, formation year and address from the IRS Business Master File

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