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Abstract
Background: The role of registers in research has been well documented. They provide access to trial records to diverse groups, for example: * Systematic reviewers and meta-analysts, to identify all trials, both published and unpublished. * Clinicians who wish to enter patients into an appropriate study * Funding bodies who wish to find out about past and present trials in order to make decisions concerning funding Recent advances in communication technology, in particular world wide access to information via the Internet, has seen important initiatives towards establishing 'mega-registers', international registers of all trials, for example the Current Controlled Trials 'MetaRegister' (mRCT) of trials. Such initiatives are undoubtedly extremely useful to researchers.
Objectives: Following the development of such mega-registers, it could be perceived that specialist trials registers, which are usually focussed by disease or by geographical area, have been superseded. Therefore, we have examined the role of specialist trial registers in light of recent developments, using the UKCCCR Register of cancer trials as a model. We argue that there is still a distinct role for the specialist register (Table 1). Advantages of Specialist Registers Advantages of 'Mega-Registers' * Centrally managed and maintained * Understanding of the specialist issues * Provide direct support and information * Direct communication with researchers * Produce specialist reports * Central archive for protocols/publications * Better assessment of needs of researchers * Reduced workload for those registering trials * All-encompassing * Global * Provides a directory of all registers * Acts as a central repository for registers that would independently lack resources to set up on-line * Standardised data-set collected for each trial Table 1. Advantages of Specialist register vs. Mega-registers
Discussion: Specialist registers have been established in a variety of disease areas in order to house a complete record of completed and on-going trials. However, they can provide more than simply a directory of trials. Trial data is sought proactively and usually verified by a co-ordinator with a specialist understanding of the subject area. As a result, the service that can be provided is adaptable and flexible and able to meet the diverse needs of all users. In the experience of the UKCCCR Register, it has become apparent that consumers form a large percentage of all users. It is our opinion that the needs of these consumers can be better served by specialist registers. We feel that these facilities would be unmanageable in the context of a mega-register. The advantages of specialist registers in research are apparent, and their role in the provision of healthcare information is continuing to develop. We believe therefore that registration of all trials with such registers remains important, and distinct from inclusion of trials on mega-registers.
Objectives: Following the development of such mega-registers, it could be perceived that specialist trials registers, which are usually focussed by disease or by geographical area, have been superseded. Therefore, we have examined the role of specialist trial registers in light of recent developments, using the UKCCCR Register of cancer trials as a model. We argue that there is still a distinct role for the specialist register (Table 1). Advantages of Specialist Registers Advantages of 'Mega-Registers' * Centrally managed and maintained * Understanding of the specialist issues * Provide direct support and information * Direct communication with researchers * Produce specialist reports * Central archive for protocols/publications * Better assessment of needs of researchers * Reduced workload for those registering trials * All-encompassing * Global * Provides a directory of all registers * Acts as a central repository for registers that would independently lack resources to set up on-line * Standardised data-set collected for each trial Table 1. Advantages of Specialist register vs. Mega-registers
Discussion: Specialist registers have been established in a variety of disease areas in order to house a complete record of completed and on-going trials. However, they can provide more than simply a directory of trials. Trial data is sought proactively and usually verified by a co-ordinator with a specialist understanding of the subject area. As a result, the service that can be provided is adaptable and flexible and able to meet the diverse needs of all users. In the experience of the UKCCCR Register, it has become apparent that consumers form a large percentage of all users. It is our opinion that the needs of these consumers can be better served by specialist registers. We feel that these facilities would be unmanageable in the context of a mega-register. The advantages of specialist registers in research are apparent, and their role in the provision of healthcare information is continuing to develop. We believe therefore that registration of all trials with such registers remains important, and distinct from inclusion of trials on mega-registers.