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Demonstration and educational project. Not medical, legal, or regulatory advice. Every participant, record, and organization shown is fictional or illustrative. Sample and template language must be reviewed and adapted with your own IRB and legal counsel before any real use. Not affiliated with, endorsed by, or representing any advocacy group, registry, company, or institution named.

Live · queried in your browser

Live Monitor

What is being published and trialed right now about patient registries and natural history studies. Narrow it with data science and informatics filters. Nothing is stored on a server, every list is fetched when you open the page or change a filter.

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Where the data come from

Publications, preprints, and open access full text come from Europe PMC, which includes all of PubMed and MEDLINE and adds preprints. Studies come from ClinicalTrials.gov. Both are open, keyless services queried live from your browser. Nothing is logged and no account is involved.

A note on the filter labels

The label on a chip and the terms it searches are not always the same words. The advocacy filter is labelled Advocacy groups, which is the better term, but its query also includes patient advocacy group because a large share of the indexed literature uses that phrase and dropping it would silently lose results. The same principle applies to Patient-reported outcomes, which is kept verbatim as an established term of art. Full mapping is in content/monitor_topics.py.