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PPMI is the Parkinson’s Progression Markers Initiative, a long-running observational study sponsored by The Michael J. Fox Foundation for Parkinson’s Research (MJFF) that collects clinical data, imaging and biological samples to find biomarkers of Parkinson’s disease progression. Researchers who want to use its data need to know how access is tiered, who approves requests and what the publication policy requires. This page covers those points, as read on the PPMI website on 2026-11-08. It is an explainer about a research resource, not medical advice.
What does PPMI stand for?
PPMI stands for Parkinson’s Progression Markers Initiative. According to the MJFF’s PPMI page, the study launched in 2010 under that name and was renamed the Parkinson’s Precision Medicine Initiative in 2026, keeping the same acronym. The PPMI sources reviewed for this page concern only the Parkinson’s study and give no cardiology meaning for the acronym.
What is the PPMI study?
PPMI describes itself as a collaboration of researchers, funders and study participants whose goal is to identify progression biomarkers that improve Parkinson’s therapeutics (PPMI, “Who We Are”, ppmi-info.org). The MJFF page states that more than 40 public, private and non-profit partners support it, that over 50,000 volunteers share data online, that more than 5,000 complete tests and share biological samples, and that sites span 50 medical centers in 12 countries. These counts were as stated on 2026-11-08 and change over time.
De-identified data and samples are shared with qualified researchers who pledge to protect the data. For the sponsor’s own profile, see CASRAI’s guide to The Michael J. Fox Foundation.
Who runs PPMI, and is there a board of directors?
The PPMI “Who We Are” page does not list a board of directors or name board members. It lists these groups: Executive Steering Committee, Working Groups and Committees, Study Cores, Academic and Industry Researchers, Participants, Clinical Sites, and Study Partners. The data-access and publication documents add a Data Access Committee (DAC) and a Data Use and Publications Committee (DPC). Governance is therefore committee-based, with MJFF as sponsor and funder.
How data access works: the four tiers
The PPMI Data Access Guidelines (Version 8.0, 1 April 2026) name the LONI Image and Data Archive (IDA) as the repository of record for PPMI. They sort data into four tiers:
| Tier | Availability | Who approves |
|---|---|---|
| Tier 1 | Publicly available; refreshed daily | No separate approval described |
| Tier 2 | Publicly available after a pre-defined embargo (for example, 45 days for biospecimen results), or earlier through a Tier 2 Data Request form (for example, large tables that cannot be transferred through the web, such as RNA sequencing and non-genetic iPSC results) | Per the Tier 2 request process in the guidelines |
| Tier 3 | Available to external investigators on request, for example whole genome and whole exome sequencing, FOUNDIN-PD (genetic data), and raw digital health technologies data from the Verily Watch and Gait substudies | Explicit approval of the PPMI Data Access Committee; review within 30 days of receipt |
| Tier 4 | Restricted to the Operational Cores, Executive Steering Committee and Statistics Core; not available externally (examples: serialized dates, biospecimen sample IDs for blinded projects, SNCA duplication or triplication data, full-text responses, geographic data and the site ID crosswalk, Genetic Registry cohort-only participants, operational datasets) | Not applicable to external users |
Tier 3 requests go to the MJFF resources mailbox named in the guidelines, with a description of the data, intended use, a brief synopsis of analyses and the names of all team members. Genetic data additionally needs the Genetic Data Request Form and a Supplemental Data Use Agreement; digital health technologies data needs the DHT Data Request Form. The guidelines also state that LONI sequesters data from PPMI biospecimens for 45 days after unblinding, and that a longer period can be petitioned to the Executive Steering Committee.
The data-access area of the PPMI site includes a demographics view, a biomarkers dashboard and an RNAseq portal, plus routes for specimen and cell line requests. The sign-in for registered users is linked from the PPMI site; this page does not reproduce login steps. Data management planning for such requests is covered in CASRAI’s data management plan entry.
Publishing with PPMI data
The PPMI Publication Policy (September 2024) sets requirements that most explainers skip:
- The DPC performs an administrative compliance review only, not a scientific quality review.
- External publications are submitted to the DPC through the PPMI website (“Submit a Manuscript or Abstract”); the DPC has two weeks. Authored publications go to the Steering Committee and the DPC, with four weeks.
- Every publication must carry the PPMI acknowledgement, including the date the data were obtained from the PPMI database and the resource identifier RRID:SCR_006431.
- The DPC must be notified on publication (email subject “Upcoming Publication from PPMI Analysis”). Authored publications add “and The Parkinson’s Progression Markers Initiative” to the author line.
The acknowledgement text reads: “Data used in the preparation of this article was obtained on [YYY-MM-DD] from the Parkinson’s Progression Markers Initiative (PPMI) database (www.ppmi-info.org/access-data-specimens/download-data), RRID:SCR_006431. For up-to-date information on the study, visit www.ppmi-info.org.” A funding statement naming MJFF and the funding partners listed on the PPMI website follows it. Record the download date when you obtain the data, because the acknowledgement requires it.
Strengths and limits
- Strength: a tiered system gives some data to anyone and a defined, time-bounded review path (30 days for the DAC) for sensitive data.
- Strength: the repository of record and a registry identifier (RRID) make the resource citable and traceable.
- Limit: Tier 4 data, including dates and geographic detail, is not available to external researchers.
- Limit: embargoes and sequestration periods (45 days for biospecimen results) delay access to new results.
- Limit: publication review adds two to four weeks to a submission timeline.
Another longitudinal neurodegeneration cohort is covered in CASRAI’s guide to ADNI; for an open genetics resource often used alongside cohort data, see the GWAS Catalog guide.
FAQ
What is the PPMI study?
An MJFF-sponsored observational study of Parkinson’s disease that collects clinical data, imaging and biosamples to identify progression biomarkers, shared with qualified researchers.
Who are the members of the PPMI board of directors?
The PPMI site lists no board of directors. It lists an Executive Steering Committee, working groups, study cores and other groups; no member names are given on the “Who We Are” page.
What does PPMI stand for?
Parkinson’s Progression Markers Initiative, renamed Parkinson’s Precision Medicine Initiative in 2026 with the acronym unchanged.
What does PPMI stand for in medical cardiology?
This page covers the Parkinson’s study only; the sources reviewed give no cardiology meaning for PPMI.
Can I use PPMI data without approval?
Tier 1 data is publicly available and Tier 2 becomes public after its embargo. Tier 3 requires Data Access Committee approval, and Tier 4 is not shared externally.
Sources
- PPMI, “Who We Are”: www.ppmi-info.org/about-ppmi/who-we-are (read 2026-11-08)
- The Michael J. Fox Foundation, PPMI: www.michaeljfox.org/ppmi (read 2026-11-08)
- PPMI Data Access Guidelines, Version 8.0, 1 April 2026: ppmi-info.org, Data Access Guidelines (PDF) (read 2026-11-08)
- PPMI Publication Policy, September 2024: ppmi-info.org, Publication Policy (PDF) (read 2026-11-08)
