Project description:To audit the proportion of clinical trials that had been publically registered and, of the completed trials, the proportion published.2 major research institutions supported by the National Institute of Health Research (NIHR).The proportion of trials reporting results within 12 months, 24 months and 'ever'. Factors associated with non-publication were analysed using logistic regression.Phases 2-4 clinical trials identified from internal documents and publication lists.In total, 286 trials were identified. We could not find registration for 4 (1.4%) of these, all of which were completed and published. Of the trials with a registered completion date pre-January 2015, just over half (56%) were published, and half of these were published within 12 months (36/147, 25%). For some trials, information on the public registers was found to be out-of-date and/or inaccurate. No clinical trial characteristics were found to be significantly associated with non-publication. We have produced resources to facilitate similar audits elsewhere.It was feasible to conduct an internal audit of registration and publication in 2 major research institutions. Performance was similar to, or better than, comparable cohorts of trials sampled from registries. The major resource input required was manually seeking information: if all registry entries were maintained, then almost the entire process of audit could be automated--and routinely updated--for all research centres and funders.
Project description:Background and data portfolio:Since 2004, the Research Data Centre of the German Federal Employment Agency at the Institute for Employment Research (RDC-IAB) has been offering comprehensive individual data on employees, unemployed persons, job seekers and participants in active labour market policy programmes for scientific labour market research. For this purpose, data from employer notifications and from different administrative processes in the labour market administration are linked. These administrative data are also combined with survey data. In addition, linked employer-employee data allow simultaneous analyses of the supply and demand sides of the labour market. Data linkage:The data can be linked using unique identifiers, such as social insurance numbers, client numbers from local employment agencies, or establishment numbers. Since the foundation of the German Record Linkage Center (GRLC) in 2011, the RDC-IAB also applies methods for linking with non-unique and error-prone linkage identifiers like names, addresses and birth dates. Data access:German data protection law classifies the data offered by the RDC-IAB as highly sensitive and strictly regulates their use by external researchers. The RDC-IAB has therefore established various data access modes. Although data can be transferred directly to research institutions in anonymised form, this procedure is generally not effective for linked data, as the loss of information due to the necessary anonymisation would be too great. For this reason, the RDC-IAB focuses on the access modes on-site use and remote data execution. In cooperation with other data centres, RDC-IAB has therefore established on-site data access at currently 16 locations worldwide.
Project description:BackgroundWe summarise the work of the Childhood Cancer Research Group, particularly in relation to the UK National Registry of Childhood Tumours (NRCT).MethodsThe Group was responsible for setting up and maintaining the NRCT. This registry was based on notifications from regional cancer registries, specialist children's tumour registries, paediatric oncologists and clinical trials organisers. For a large sample of cases, data on controls matched by date and place of birth were also collected.ResultsSignificant achievements of the Group include: studies of aetiology and of genetic epidemiology; proposals for, and participation in, international comparative studies of these diseases and on a classification system specifically for childhood cancer; the initial development of, and major contributions to, follow-up studies of the health of long-term survivors; the enhancement of cancer registration records by the addition of clinical data and of birth records. The Group made substantial contributions to the UK government's Committee on Medical Aspects of Radiation in the Environment.ConclusionAn important part of the ethos of the Group was to work in collaboration with many other organisations and individuals, both nationally and internationally: many of the Group's achievements described here were the result of such collaborations.
Project description:BackgroundSignificant research on the epidemiology and natural history of childhood cancer took place in the Universities of Oxford and Birmingham over sixty years. This is the first of three papers recording this work and describes the Oxford Survey of Childhood Cancers (OSCC), the largest case-control survey of childhood cancer ever undertaken.MethodsThe OSCC studied deaths in Britain from 1953 to 1981. Parents were interviewed and medical records from ante-natal clinics and treatment centres were followed up and abstracted. The survey left Oxford in 1975 and was run subsequently from Birmingham. The data are now being documented and archived to make them available for future study.ResultsMany papers have resulted from this survey, most notably those relating to the association first reported therein between childhood cancer and ante-natal X-raying. This paper is a historical review of the OSCC.ConclusionsIn spite of many analyses of the study, this historic data set has continuing value because of the large number of examples of some very rare tumours and the detailed clinical and family history data that are available; and also because of the possibility of carrying out new analyses to investigate emerging research issues.