Record keeping

	All Haemophilia Centres will maintain medical records..
	all Haemophilia Centres will maintain a formal register, with clear indication of those patients that are under active treatment or review.
	all Haemophilia Centres will report any adverse events to UKHCDO, the regional network and - where appropriate - to the Committee for Safety of Medicines.
	All Haemophilia Centres will issue patients with green medical cards giving details of their inherited coagulopathy.
	All data collection must comply with the Data Protection Act of 1998, including the new Medical Information Act, with informed consent being obtained from patients for clinical details to be held on a patient register.
	All Haemophilia Centres will submit annual returns to the centralised data base of UKHCDO and to their commissioning authorities..
	All Haemophilia Centres will respond to requests for patient data from UKHCDO, and its working parties.
	Patients on home therapy will take responsibility for submitting data on treatment with coagulation factor concentrates on a regular basis as part of their agreed package for being on home treatment. This information is in addition to other data that the patient must supply to enable outcomes to be assessed.

Data collection

The commissioning process will be improved by the establishment of a standardised and computerised haemophilia database, both for registration and follow-up of patients.

SEVERE/MODERATE HAEMOPHILIA
Registration data

	new NHS number or hospital
	sex M/F
	address
	postcode
	date of birth DD/MM/YYYY
	diagnosis by amended ICD code
	GP code 8 digit code
	basal level of factor VIII/IX
	current weight kg

Follow-up data

	clinical status free text eg target joints, surgery, pseudotumour
	inhibitor status
	dose of prophylaxis units/kg x X per week
	current treatment
	outcome data
	bed usage
	product type recombinant = REC
	high purity monoclonal = HPM
	high purity affinity purified = HPAP
	intermediate purity = IP

This information should be supplied on a regular basis, usually three-monthly or following any unanticipated change of therapy.

MILD HAEMOPHILIA AND RELATED CONDITIONS
Registration data

	new NHS number or hospital
	sex M/F
	address
	postcode
	date of birth DD/MM/YYYY
	diagnosis by amended ICD code
	GP code 8 digit code
	basal level of factor VIII/IX
	current weight kg

Follow up data

	clinical status
	current treatments and costs

This information should be supplied on an annual basis or when there is any unanticipated increase in coagulation factor concentrate usage.

As originally published, ICD codes bear little relevance to haemophilia diagnosis in day to day clinical practice. An amended ICD coding system - based on diagnoses used in the UKHCDO registration scheme - is attached as appendix 3.