- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
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- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
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The website of the National Institutes of Health in the USA
The NIH database of clinical trials provides more information on Compassionate Use Programmes
The NIH database of clinical trials database can be searched at: http://www.clinicaltrials.gov
This website is very similar to the EudraCT register; it contains information on clinical trials, studies, and Compassionate Use Programmes worldwide, including European sites.
In the USA, the equivalent term for Compassionate Use Programmes is “Expanded access studies”. You can choose this option in study type. Unlike the EU register, you cannot restrict the search to rare diseases.
Searching for compassionate use programmes in the NIH database
You can also type the name of a specific disease and see if and where compassionate use programmes are listed.
The EudraCT register has been in use since 2006
The European Register of Clinical Trials: https://www.clinicaltrialsregister.eu |
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative