Sources and method
Everything in a studytrace.org report comes from public scientific databases. This page lists them and explains how the written summary is produced and checked.
Where the information comes from
Scientific papers: titles, abstracts, journals and dates. Europe PMC includes all of PubMed and MEDLINE, the US National Library of Medicine's index of biomedical research. Its author records (names and institutions) are also used to find the researchers who publish most on a condition.
Every paper in a report links to its PubMed page, where you can read the abstract and find the full article.
Active clinical trials: what is being tested, the sponsor, the phase, the sites and the contact the study team has listed.
Research projects funded by the US National Institutes of Health, with the lead investigator and institution.
When available, a cleaner ranking of which researchers and institutions publish the most on a condition. Researcher profiles link to ORCID (orcid.org) when one exists.
The official name, definition and synonyms used to confirm which condition you mean. Accessed through the EMBL-EBI Ontology Lookup Service.
Which researchers and sites are included
Researchers, research centres and trial sites are limited to North America, Europe, Australia and New Zealand. Researchers are ranked by how many papers on the condition they appear on in the last ten years. That measures research activity. It does not measure clinical skill, and not every researcher sees patients.
How the summary is written
The plain-language summaries are written by Google Gemini, an AI model. Gemini is given only the papers, trial records and project descriptions found for your condition, and nothing else.
Each statement it writes has to include a quote from one of those sources. Before the report is shown, studytrace.org checks that the quote appears word for word in that source, that every number in the statement appears in the quote, and that every treatment name appears in the source. Statements that fail a check are removed, and the report says how many were removed.
Trial sponsors, phases, sites, contacts, researchers and institutions are taken straight from the databases above, not from the AI.
Directories we link to
These are not used to write the summary. They are where to find expert centres and patient organisations.
Reference portal for rare diseases: expert centres, patient groups and diagnostic labs by country.
Expert centres recognised by the European Union.
The US National Organization for Rare Disorders: patient organisations and disease information.
Plain-language information on rare conditions from the US National Institutes of Health.
The European alliance of rare-disease patient organisations.
The Swiss alliance for rare diseases.
What to keep in mind
- Every statement has an “Exact words from the source” panel. Open it for anything important, because a reworded sentence can lose detail.
- Reports are built from abstracts and registry entries, not full articles, so details may be missing.
- New findings may not be published or registered yet.
- studytrace.org gives information only. It is not medical advice and not a diagnosis. Talk to your doctor or a specialist centre before making decisions about your care.