Created: James Gardner, 2016-02-22
Audience: Community
Maturity: Planning
Here is a list of data sources we know about. We're also very keen to know about organisations that host data that isn't already publicly available.
If you know any of the links to the licensing information, we'd be pleased to see those too.
Theme: Clinical Trials (via tfmorris)
License: : unknown
Description : The Agency for Healthcare Research and Quality is a part of the U.S. Department of Health and Human Services. It publishes the Systematic Review Data Repository (SRDR) which is a tool for the “extraction and management of data for systematic review or meta-analysis”.
License : unknwon
Description : The Cochrane Central Register of Controlled Trials (CENTRAL) is a database that provides reports of randomized controlled trials. Records contain the list of authors, the title of the article, the source, volume, issue, page numbers, and, in many cases, a summary of the article (abstract). CENTRAL is freely available to Cochrane members via the Cochrane Register of Studies Online (CRSO).
License : unknown
Description : The Cochrane Schizophrenia Group’s Register contains 13542 coded studies (as of February 2012). The register is maintained on Meerkat 1.6. This version of Meerkat stores references as studies. When an individual reference is selected through a search, all references which have been identified as the same study are also selected.
License : Unknown
Description : The NIHR, Evaluation, Trials and Studies (NETS) programmes, fund valuable independent research for health and social care decision makers. They are managed by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), based at the University of Southampton. While some of the research programmes share common themes and complement each other, they each have different specialist funding remits.
License : Unknown
Description : The UK Clinical Trials Gateway provides information about clinical trials running in the UK. It is designed to enable patients and their clinicians to locate and contact trials of interest.
Theme: Drugs (via tfmorris)
License : Unknown
Description : The DrugBank database is a bioinformatics and cheminformatics resource that combines detailed drug (i.e. chemical, pharmacological and pharmaceutical) data with comprehensive drug target (i.e. sequence, structure, and pathway) information. The database contains 7759 drug entries including 1602 FDA-approved small molecule drugs, 161 FDA-approved biotech (protein/peptide) drugs, 89 nutraceuticals and over 6000 experimental drugs. Additionally, 4300 non-redundant protein (i.e. drug target/enzyme/transporter/carrier) sequences are linked to these drug entries. Each DrugCard entry contains more than 200 data fields with half of the information being devoted to drug/chemical data and the other half devoted to drug target or protein data.
License : open (link?)
Price (USD) : 0
Description : The goal of the open.fda.gov is to create easy access to public FDA data by indexing high-value public-access data, formatting and documenting that data in developer and consumer-friendly standards, and making that data available via a public-access portal that enables developers to quickly and easily use it in applications.
License : unknown
Description : The NLM Drug Information Portal gives users a gateway to selected drug information from the U.S. National Library of Medicine and other key U.S. Government agencies. More than 49,000 drugs can be searched using this facility. Many drugs in other countries are covered, but not as thoroughly as U.S. drugs.
Base de données publique des médicaments (via okfnvince)
https://www.data.gouv.fr/en/datasets/base-de-donnees-publique-des-medicaments-base-officielle/1
License : unknown
Description : The public database of medicines enables the general public and health professionals to access data and reference documents on marketed drugs or have been marketed during the last two years in France.
https://www.nlm.nih.gov/research/umls/rxnorm/docs/rxnormfiles.html
Via : https://discuss.okfn.org/t/list-of-data-sources/1343/18
Description : US-specific terminology in medicine that contains all medications available on US market. It can also be used in personal health records applications. It is part of UMLS terminology and is maintained by National Library of Medicine.
https://www.freebase.com/medicine1
License : open (link?)
Price (USD) : 0
Description : Concerned with both the art and the science of maintaining and restoring human health, to paraphrase Wikipedia.There's much to explore here, whether you are a healthcare professional or an interested data expert. Feed your hypocondriac tendencies by browsing the diseases, learn about the human body (choose from such structures as artery, muscle, nerve, bone, etc.).
License : open (link?)
Price (USD) : 15000 per year
Description : The WHO DDE (Drug Dictionary Enhanced) contains unique product codes for identifying drug names and evaluating medicinal product information, including active ingredients and therapeutic uses.
Please bear in mind, these are in addition to the registers listed on this page:
- https://github.com/opentrials/registers/
- https://github.com/opentrials/registers/blob/master/data/registers.csv
For this reason, the following that were listed on this source page are not duplicated here:
- European Medicines Agency Trial Database
- ClinicalTrials.gov
We're also aware of (via todrobbins):
- Premarket Approval (PMA) Clinical Trials Database3
- New Pediatric Labeling Information Database - "This list highlights key pediatric information from the studies submitted in response to pediatric legislative initiatives."
- Post-Approval Studies1
and the US legislation for reporting results (via skram):