HASS (Haematology Active Surveillance System)
What is it?
A new surveillance system for rare haematological disorders that is based on similar systems in paediatrics (BPSU) and obstetrics (UKOSS).
Aims
- 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
The British Paediatric Surveillance Unit (BPSU)
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.
UK Obstetric Surveillance System (UKOSS)
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.
Current Study
InCiTE Study
'Case Control Study of Intra-Cranial Haemorrhage in Thrombocytopenic Haematology Patients' Pilot study for HASS
Future Studies
If the pilot study for this system is successful, then future studies will be planned.
Contact details
Clinical Data Manager
Tania.Reed@nhsbt.nhs.uk
Coordinator
Lise.Estcourt@nhsbt.nhs.uk
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