Haematology Active Surveillance System
What is it?
A national case-control study of intra-cranial haemorrhage in the UK, over a four year period, this has now closed to recruitment.
- To facilitate research into uncommon haematological disorders.
- To allow haematologists to participate in the surveillance of rare conditions of public health importance.
- To increase awareness and knowledge within the medical profession of these less common disorders.
Why study rare disorders?
- They are under-researched.
- Our understanding of them is poor.
- Any interventions used in current clinical practice are rarely based on robust evidence.
- Routine sources of information are limited or unreliable.
- Comprehensive studies require a large collaboration to identify relatively small numbers of patients.
Examples of surveillance systems
BPSU has developed a reliable and straightforward method to investigate uncommon disorders of childhood and has conducted studies for almost twenty years.
BPSU surveys have been used to inform national screening committee decisions on antenatal screening. Rates of neonatal herpes and congenital toxoplasmosis were found to be too low to justify introducing a maternal screening programme. BPSU surveillance for congenital syphilis along with other information revealed a continuing level of infection which justified the existing screening programme.
A BPSU survey documented the association between Reye's syndrome and consumption of aspirin.
UKOSS uses similar methodology to that developed by the BPSU to study rare disorders of pregnancy. Anonymous descriptive, case-control and cohort studies are conducted through a prospective monthly case-collection scheme.
'Case Control Study of Intra-Cranial Haemorrhage in Thrombocytopenic Haematology Patients' pilot study for HASS.
If the pilot study is successful, then future studies will be planned.