Haemoglobinopathy Registry  
     
How to Participate?

European Haemoglobinopathy Registry

  • Each centre involved in the EU Concerted Action will act as the principal centre for their country, collecting information from other participating hospitals. Central Middlesex Hospital - The North West London Hospitals NHS Trust is the British centre and also the "home" and the coordinating centre of the full registry.

  • This EHR website has been developed where project information, registration forms, questionnaires, consents sheets and patient information can be accessed.

  • To join doctors should complete a Registration Form, which can be accessed on this Web site. The application is reviewed to ensure only registered doctors are participating. Once accepted you will be sent a password which is required to access the secure website and for data validation.

  • Having received (by e-mail or post) a username and password, you will be able to complete data entry forms on screen and submit them via our secure website. Alternatively hard copies of the data entry forms can be obtained from CMH and the completed forms returned by fax or post.

  • Centres require local research ethics committee permission and individual patient consent before data can be entered into the registry. Additionally the Caldicott Guardian in your hospital will review the project procedures to ensure strict confidentiality of patient data is maintained.

  • The project has been approved by the North Thames Multicentre Research Ethics Committee (MREC) Registration No: MREC/99/2/4. Participants may have a copy of the documentation for local ethics committee applications. We are registered with the UK Data Protection Register: Registration No: Z5730583.
  • Costs of joining incur start-up and maintenance costs such as employing a data collector, computer hardware and software and administration costs. Participants also contribute to the maintenance of the central registry at Central Middlesex Hospital.

When accepted as a participant, you will be sent a user id and password which is required to access the members area of the website, where data entry forms and additional information can be found.

To become a registered member, please complete the 'Membership Registristation' form, click here.

   
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Last updated November 20, 2003 15:35.

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