Open Data
The datasets behind Trial Friend's data studies, free to download and reuse. Journalists, researchers, advocacy groups, and students are welcome to build on these numbers. All we ask is credit with a link to trialfriend.com.
CC BY 4.0Free for any use, including commercial, with a link backHelp-paying programs for all 243 FDA-approved drugs Trial Friend tracks, checked against each drugmaker's own program pages, never aggregators. One row per drug: the program's name, web page and phone, whether it offers copay help, a free-drug program, a bridge supply or a support hub, which insurance types it names, and how many charity funds are open for the drug's conditions. A second file rolls the same data up by the year each drug was first approved in the US, so it shows whether newer rare disease drugs launch with help in place. On October 14, 2026, 223 of 243 drug entries had a manufacturer program and 7 had none we could find. A brand approved for 2 conditions has 2 entries here, while the patient assistance finder counts each medicine once, so its totals are a little lower.
For each of the 229 conditions Trial Friend tracks, the number of FDA-approved medicines (from the approved-medicines dataset) next to the number of trials open to new patients and who sponsors them (from the trial census, using each trial's lead sponsor class on ClinicalTrials.gov). Each condition gets a gap category. 59 conditions have no approved medicine but open trials, 13 have neither, and 51 have open trials but none run by a drug company.
Every rare disease FDA decision on Trial Friend's calendar, 1 row per application: 76 so far, with decisions recorded since July 2026. Each row gives the drug, company, condition, application type and status (pending, extended, approved or complete response letter), the sponsor's original target action date with its source, and the decision date. For decisions whose sponsor published an exact target date, days_vs_original_target shows how many days early (negative) or late the FDA acted. The file is rebuilt from the live calendar on every site update, so it always matches the FDA calendar pages.
Every FDA-approved medicine whose current US label names one of the 235 conditions Trial Friend tracks, 1 row per medicine. Built from Trial Friend's drug entries and a search of FDA label text through openFDA, with discontinued products removed using Drugs@FDA marketing status, then checked by hand against current labels, Drugs@FDA and FDA's biologics pages. That hand audit added the immune globulins, clotting factor products and other biologics that openFDA does not hold, and removed medicines used only off-label. Corticosteroids and immune globulins count as 1 medicine each, with the individual products in the also_sold_as column. A medicine counts only when its label names the condition, so drugs doctors commonly use off-label are not listed.
Active clinical trial counts for each of the 236 rare diseases Trial Friend tracks, split by recruitment status. Built from ClinicalTrials.gov v2 with the same condition matching our live disease pages use, deduplicated by NCT identifier within each disease and cleaned with our per-disease exclusion lists.
Where recruiting rare disease trials actually run. One file gives each tracked disease's recruiting trial count and how many US states hold at least one of its sites; the other gives every state's trial site listings, recruiting trials, and how many tracked diseases are reachable in-state. Sites are counted once per unique city and state pair per trial.
Which open rare disease treatment trials exclude people over a medication they commonly take. Every recruiting or not-yet-recruiting interventional trial for the 37 conditions that had a Trial Friend medication checker on September 28, 2026 was run through that checker. The file gives each condition's share of trials with a medication exclusion, split into steroids, immune-targeting drugs, gene, RNA and cell therapies, cancer drugs and other medicines. Trial-by-trial results live in the condition's medication checker on Trial Friend. Only matches on a named drug or its drug class count. A hand check of 100 matches found 63 clear exclusions, 23 that apply to some users (a dose limit, a recent start or a stable-dose rule) and 14 errors.
Both datasets are built from the ClinicalTrials.gov v2 API using the same disease name and alias matching that powers Trial Friend's live disease pages, then cleaned with our hand-maintained exclusion lists for known condition mismatches. Trials serving several tracked diseases are deduplicated by NCT identifier in study-level totals. Site counts merge duplicate listings of the same hospital (one row per unique city and state pair per trial), and a facility-level robustness check moved the headline single-site share by only 2 percentage points.
Known limitations: registry site lists are sponsor-reported and can lag reality in both directions, condition matching against a registry is imperfect, and for the very broadest disease categories a single query can hit the registry's 1,000-result page cap, slightly undercounting them. The census and travel datasets were generated on different dates with different status filters, so their trial totals are not directly comparable to each other. Exact figures are close estimates, not gospel.
Data: <a href="https://www.trialfriend.com">Trial Friend</a>, CC BY 4.0 Questions, corrections, or a dataset you wish existed? Email jason@trialfriend.com.