Alzheimers Disease Data Initiative Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
Alzheimer's Disease Data Initiative is a coalition of leading academic, advocacy, government, industry, and philanthropy organizations that recognizes the need for dementia researchers to find easier ways to share data, analytical tools, and scientific findings. These partners are working together to accelerate progress towards new diagnostics, treatments, and cures for Alzheimer's disease and related dementias. Learn more atwww.alzheimersdata.org.
- Income
- $12.5 million
- Spending
- $17.0 million
- Spent on programs
- 95%
- Reserves
- 0.2 months of spending
- Largest source of income
- donations and private grants, 99%
- Employees
- 0
- Volunteers
- 0
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Weak: 31 out of 100. Higher than 3% of charities in its peer group (diseases, $10m to $100m).
Reserves
4 of 35Spendable reserves would cover 0.2 months of spending.
Debt
2 of 20It owes 84% of what it owns.
Living within its means
0 of 15Spending exceeded income by 37% of income.
Income trend
10 of 15Income fell 4% on the year before.
Spending floor
15 of 1595% of spending went to programs and raising each dollar of donations cost 0 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Weak: 42 out of 100. Higher than 1% of charities in its peer group (diseases, $10m to $100m).
Independent board
0 of 252 of 2 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
0 of 8Reports no written whistleblower policy.
Record keeping policy
0 of 7Reports no written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Independent check of accounts
0 of 15Its accounts were not audited or reviewed by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (5)
- $5.2 million spent. AD Workbench - a free, secure, cloud-based data sharing and analytics environment - is the interoperability layer of the AD Data Initiative technical suite and its flagship product offering. AD Workbench empowers researchers around the world to share, access, and analyze data across platforms. It provides data hosting, offers collaborative workspaces, and supports federated and distributed data sharing via FDSA.There are currently 8,400+ registered AD Workbench users from across 120 countries with access to over 800K participant records. Through AD Workbench, researchers and institutions can accelerate progress towards new and better treatments and diagnostic tools for Alzheimer's disease and related dementias. (Expenses $ 2,270,057 including grants of $ 550,000) Core to the AD Data Initiative's mission is the belief that data sharing and global collaboration will accelerate progress, seed innovation and lead to breakthroughs faster. AD Data Initiative is advancing a scientific strategy and investing in strategic initiatives to foster global collaboration, empower researchers and advance scientific discovery. These initiatives include: the William H. Gates Sr. Fellowship Program, Global Data Challenges, Scientific Driver Projects and Global Research Collaborations and Consortia. This scientific strategy and the AD Data Initiative's programmatic efforts are guided by an evolving list of priority research questions that have been shaped by insights from Advisory Board members, input from the AD research community and engagement with thought leaders in Alzheimer's and related dementias research. (Expenses $ 661,862 including grants of $) The AD Data Initiative amplifies its mission through communications and engagement: website, social media, conferences and events, partnership campaigns/communications and special projects. These efforts expand access to important datasets, broaden the use of data platforms and tools, and foster global collaboration to accelerate discovery.
- $5.1 million spent. Global Research Platforms - GRIP is a secure, cloud-based, and open-access platform designed to help researchers integrate, analyze, and share complex biomedical data with ease. It is a multi-site, multi-modal collaboration platform with co-developed, modular tools, workflows, and workspaces that enable secure data sharing, analysis, and collaboration.
- $2.9 million spent. The AD Data Initiative product suite consists of data sharing and analytic products along with enabling technical resources to empower researchers around the world to share, access and analyze data across multiple platforms. AD Workbench is the interoperability layer of the AD Data Initiative technical suite and its flagship product offering. There are currently more than 120 datasets accessible via AD Workbench - including clinical tabular data, imaging, omics and biosamples. The AD Data Initiative works closely with data contributors and data platform partners to ensure interoperability with AD data-sharing platforms and data accessibility across the global Alzheimer's data ecosystem. (Expenses $ 2,270,057 including grants of $ 550,000) Core to the AD Data Initiative's mission is the belief that data sharing and global collaboration will accelerate progress, seed innovation and lead to breakthroughs faster. AD Data Initiative is advancing a scientific strategy and investing in strategic initiatives to foster global collaboration, empower researchers and advance scientific discovery. These initiatives include: the William H. Gates Sr. Fellowship Program, Global Data Challenges, Scientific Driver Projects and Global Research Collaborations and Consortia. This scientific strategy and the AD Data Initiative's programmatic efforts are guided by an evolving list of priority research questions that have been shaped by insights from Advisory Board members, input from the AD research community and engagement with thought leaders in Alzheimer's and related dementias research. (Expenses $ 661,862 including grants of $) The AD Data Initiative amplifies its mission through communications and engagement: website, social media, conferences and events, partnership campaigns/communications and special projects. These efforts expand access to important datasets, broaden the use of data platforms and tools, and foster global collaboration to accelerate discovery.
- $2.3 million spent. Core to the AD Data Initiative's mission is the belief that data sharing and global collaboration will accelerate progress, seed innovation and lead to breakthroughs faster. AD Data Initiative is advancing a scientific strategy and investing in strategic initiatives to foster global collaboration, empower researchers and advance scientific discovery. These initiatives include: the William H. Gates Sr. Fellowship Program, Global Data Challenges, Scientific Driver Projects and Global Research Collaborations and Consortia. This scientific strategy and the AD Data Initiative's programmatic efforts are guided by an evolving list of priority research questions that have been shaped by insights from Advisory Board members, input from the AD research community and engagement with thought leaders in Alzheimer's and related dementias research.
- $661,862 spent. The AD Data Initiative amplifies its mission through communications and engagement: website, social media, conferences and events, partnership campaigns/communications and special projects. These efforts expand access to important datasets, broaden the use of data platforms and tools, and foster global collaboration to accelerate discovery.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since June 2021.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
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