The European Register of Clinical Trials (EudraCT-R) and other online sources

EudraCT Register is the database of all clinical trials authorised in Europe, and has information on Compassionate Use Programmes

If you connect on the internet to www.clinicaltrialsregister.eu, you will find the site where you can search for Compassionate Use Programmes. Note that this site is for clinical trials, and a Compassionate Use Programme is not a clinical trial. However in some EU Member States there is no procedure to run a Compassionate Use Programme other than to authorise an open label uncontrolled trial (where all patients receive the medicinal product, ie, there is no experiment; nobody is receiving a placebo).

For example, below is a search result for Compassionate Use Programmes for rare diseases. For this advanced search, we looked for all trials that contain the term “compassionate” in their title, and we ticked “rare disease” in the search options.

Advanced search in the European register of clinical trials

In August 2013, the register contained 20 studies that corresponded to this search.
For example, for patients affected by the rare disease hypereosinophilic syndrome, the title of an open-label study contained the term “compassionate”:

Result of a search in the European register of clinical trials

This trial (N° 2007-000838-39) was conducted in four EU Member States: France, Belgium, Great Britain and Germany. By clicking on the country (in blue), you can find more information (for example the total number of patients who can be treated in the programme in all four countries: 200).