You asked
Under the FOI act I would like to know how many notifications have been made to the National Haemophilia Database (UKHCDO) upon deaths of their registered patients. Ideally this would be supplied on a year-by-year basis.
The 2013 Information Governance Assessment of the UKHCDO (NHD - National Haemophilia Database) explains that there is an arrangement in place whereby the ONS notify the UKHCDO when one of their registered patients dies. That report can be found here (See page 2, point 3) - http://www.ukhcdo.org/wp-content/uploads/2016/02/Information-Governance-Assessment-of-the-National-Haemophilia-Database-2013.pdf
We said
Thank you for you query
The report refers to a medical research study managed by NHS Digital who notify the National Haemophilia Database of such deaths.
Unfortunately we do not hold this information. We would suggest contacting NHS Digital at Enquiries@nhsdigital.nhs.uk for this information.