Texas · Nonprofit
CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC
CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC (Texas) receives grants from 4 organizations whose IRS filings report $1,585,197 to it, the largest being THE LEONA M AND HARRY B HELMSLEY CHARITABLE TRUST ($752,785). 3 of them have funded it in more than one year.
- Revenue FY2025
- $8.9M
- Funders on record
- 4
- Grants received
- $1.6M
- Net assets
- $1.8M
What Clinical Data Interchange Standards Consortium Inc does
Mission
To create connected standards across the study information lifecycle to enable accessible, interoperable, and reuable data for more meaningful and effective research.
As stated on its FY2025 Form 990.
Programs
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,…
$4,629,083 spent$280,038 earned by the program76% of program spendingEducation - 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.
$603,022 spent$865,958 earned by the program10% of program spendingEvents - 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.
$857,770 spent$1,171,028 earned by the program14% of program spendingPartnerships & 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.
$14,310 spent$1,972,712 earned by the program0% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $6,104,185.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2018 to 2019, from $5.4M to $7.2M (+33%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2017 4% · 2018 2% · 2019 6% · 2020 8% · 2021 10% · 2022 6% · 2023 5% · 2024 3% · 2025 3%. Grants only. Government contracts and fees sit inside program revenue.
51% of CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Chris Decker
President & CEO
Board chair
Brooke Hinkson
Chair
As listed on its FY2025 Form 990.
The chief executive listed changed between the FY2020 and FY2021, and between the FY2023 and FY2024 filings.
Who funds it, year by year
2017 → 2023: the base held at 1 funder, grant income fell $29k → $16.
1 of 4 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 0% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC leans on a few funders — its largest provides 47% of grant income and the top three 100%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
53% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC.
Largest funder’s share by year: 2017 100% · 2018 100% · 2019 74% · 2020 100% · 2021 100% · 2022 100% · 2023 100% — broadly stable.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Where its funders are
CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC draws 100% of its grant income from funders outside Texas, across 3 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $66 arriving through sponsors registered in 1 state is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC runs a healthier operating margin than half of the 4,665 health nonprofits its size.
this organization peer median middle 50% of peers· 4,665 health nonprofits $1M–$10M, FY2025
Government funding CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $3.3M on record.
- Department of Health and Human Services$3.3M
- Department of Veterans Affairs$6k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Texas
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
72% of spending goes to programs.
Governance
Public support
100%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 40 states
Part of a family of 1 related entity
- Cdisc Europe Foundation · exempt
Screen this organization
A dated, signed PDF of the compliance screen for CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC?
- CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC (Texas) receives grants from 4 organizations whose IRS filings report $1,585,197 to it, the largest being THE LEONA M AND HARRY B HELMSLEY CHARITABLE TRUST ($752,785). 3 of them have funded it in more than one year.
- How many funders does CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC have?
- IRS filings report 4 organizations giving $1,585,197 in grants to CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC, 3 of which have funded it in more than one year.
- Who is the largest funder of CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC?
- THE LEONA M AND HARRY B HELMSLEY CHARITABLE TRUST is the largest funder on record, with $752,785 in grants. The full list of funders is on this page.
- How can an organization like CLINICAL DATA INTERCHANGE STANDARDS CONSORTIUM INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Texas. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Clinical Data Interchange Standards Consortium →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 4 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing