Registers

Background

The Programme Centre is developing systems for establishing longer-term outcomes through patient registers. Two separate expert groups have guided this work on registers.

The first, which met in 2003, focused on the ‘old’ PKU and CHT registers. This multi-disciplinary group included parent representation from the National Society of Phenylketonuria (NSPKU) and Children Living with Inherited Metabolic Disorders (CLIMB), as well as professionals representing screening laboratories, data protection and ethics, paediatrics and the existing registers. There was agreement that the register would yield limited use in an anonymised format and therefore the consenting of the registered patients would be pursued.

The remit of the second group was to develop the format for new, prospectively consented, patient registers. Carol Dezateux led this group, incorporating information from the work of the ‘old registers’ expert group and linking the ‘new registers’ strategy to the existing work on informatics development. This group set out to review generic principles governing the establishment, custodianship and access to data in disease registers generated from the programme. This group first met in 2003 to collate a range of perspectives on disease registers and to determine register requirements for each specific condition. Again, the membership of this group was multidisciplinary, including both professional and parent representation from each condition. There were also representatives from the Cystic Fibrosis Trust database at this meeting.