This project has been approved by the North Thames Multi-Centre Research Ethics Committee (London, UK) on the 19/03/1999, reference no. MREC/99/2/4. In order to participate, UK doctors should, additionally, seek Local Research Ethics Committee permission. Participants from other countries should ensure appropriate ethics review and permission has been given prior to participation.

The Patient Information Sheets and Consent Forms can be found here. These have been agreed by the North Thames Multi-Centre Research Ethics Committee for use in this project. UK participants must use these forms. They can be printed out on headed paper by participating doctors.

The European Haemoglobinopathy Registry has been registered with the Data Protection Registry under the UK Data Protection Act (1998), registration no. Z5730583, and is, therefore, subject to the provisions of that Act (which apply within the European Union). Non-EU participants are responsible for ensuring compliance with local and country data protection rules and laws.