European Haemoglobinopathy Registry

This is a report on external research. It is not endorsed by the Sickle Cell Society and does not form part of our Information Standard-accredited information

Principal Investigator: Professor Sally C. Davies
Data Analyst: Brian Dugan
Project Co-ordinator: Annette Gilmore

A multi-centre registry of patients with haemoglobinopathies, known as the European Haemoglobinopathy registry (EHR), is being developed at Central Middlesex Hospital (CMH), London. This will result in computerised medical records for patients.

Why should a registry be established?

The need for a register of patients suffering from a haemoglobinopathy disorder has been recognised by various government and health service research reports, including the SMAC report in 1993, which was the first major review of services of sickle cell and thalassaemia patients.

  • monitor more effectively the clinical care provided for patients with the disorder
  • enable audit and evaluation to determine effectiveness of health care services provided
  • plan acute hospital and community services
  • assist needs assessment

What is the EHR?

The European Haemoglobinopathy Registry is held on a stand alone personal computer and consists of a number of separate sub-registries, maintained at Central Middlesex Hospital. Teleform software is used to develop patient data questionnaires and the Patient Analysis & Tracking System (PATS) for data storage and analysis. PATS is an interactive clinical database specifically designed to support prospective multi-centre registries.

What information is collected?

The information collected is routine, as normally recorded in hospital medical records. It includes the past medical history, demographics, clinical, treatment and laboratory data. The project requires an initial registration questionnaire to be completed for all patients and at least an annual update of this information.

How is the information collected?

This is a collaborative multi-centre project. All hospital consultants caring for patients with a Haemoglobinopathy can join in. Patients have to give their written consent to be on the database. Participating centres make their own arrangements for data collection. At Central Middlesex information is collected during the outpatient visit by the doctors and nurse specialists. Data not completed is collected from the medical notes by the project co-ordinator.