All centres delivering haemophilia care should collect detailed information concerning the outcome of treatment.

As part of their home therapy package, patients and their families will agree to provide outcome data as requested by the Haemophilia Centre.

Collation of outcomes should be determined locally with commissioning authorities but should include at the least the following:

	total coagulation factor concentrate received by each patient per year
	total number of treatments received by each patient each year
	amount of coagulation factor concentrate given for prophylaxis and emergency therapy
	whether the patient is on home therapy
	number of breakthrough bleeds on prophylactic regimens
	days missed at work due to haemophilia
	days missed at school due to haemophilia
	days spent in hospital due to haemophilia
	any surgical procedures carried out
	evidence of joint and muscle damage by both clinical and radiological assessment

Outcome data should form part of an annual report, to also include information on audit activities and accreditation status, produced by Haemophilia Centres for their commissioning authorities.