Provide advice to individuals who plan to update and maintain the programs for record linkage and related data preparation. May 31, 2019 ghosh re, padmanabhan s, williams r, et al. Methods to generate and validate a pregnancy register in the. For practices that have consented to participate in record linkage, general practice software suppliers submit personal identi. Opportunities and challenges of data linkage in the uk. In 2006, the australian population health research network phrn was created and funding was provided to develop data linkage. Data source our analysis used the clinical practice research data link cprd gold database where anonymised and longitudinal primary care clinical data are contributed by uk general family practices gp who use the vision health record system 19. Cprd collects fullycoded patient electronic health records from gp practices using the vision or emis software systems. Cprd gold linkage data include patients from 411 practices. The clinical practice research datalink cprd is an ongoing primary care database of anonymised medical records from general practitioners, with coverage of over 11. George bouras, elaine marie burns, annmarie howell, alex bottle, thanos athanasiou, ara darzi. Cprd and nhs digital have a data sharing agreement in place governing the linkage process. Examples of where cprd data have been used for pharmacovigilance research and how these have fed into guidelines and policy are discussed.
Pdf approach to record linkage of primary care data from. Uptodate primary care and linked data are provided for currently. Jun, 2019 the pregnancy register is available to researchers alongside existing cprd gold datasets, upon receipt of isac approval of a study protocol. Cprd data are presently being enriched through linkages with other data sources including disease registry data 6, 7 and data on hospital utilisation and mortality records. Pdf how clinical practice research datalink data are. Cprd has a deterministic record linkage scheme using the nhs number which both increases and enhances the available data on patient care, diseases and conditions by linking to.
The cprdlinkutil package is designed for use with the cprdutil package, which creates stata datasets from text data files produced by the clinical practice research datalink cprd. Further information about set 17 and how cprd provides routine data linkages between primary care and other healthrelated patient datasets is available on our linked data web page. Cprd can advise on which database may be best to select for a. Linkage coverage period and linkage regional limitation were considered. Tpp announces collaboration with clinical practice research. Primary care data collected from vision gp clinical software data are recorded as part of routine clinical practice coded data, free text. From the vision front screen, click on modules and select crpd data collection. The software in this list is open source andor freely available. Cprd is jointly sponsored by the medicines and healthcare products regulatory agency and the national institute for health research nihr, as part of the department of health and social care. The clinical practice research datalink cprd, known as the general practice research database gprd until march 2012, is a primary care database in the united kingdom with links to other data. Currently there are two separate databases, gold data contributed from primary care practices using the vision software system and aurum data from emis software practices, available to researchers. Cprd linked data linkage of cprd primary care data with other patient level datasets is available for english practices who have consented to participate in the linkage scheme. Tpp announces collaboration with clinical practice research datalink. The cprd provides some of the largest primary care databases in the world and aims to support international public health research by providing anonymised uk ehrs to researchers within academic, regulatory, and pharmaceutical organisations.
Cprd is expanding its healthcare data and research services to increase both the cover of primary care data and the number of datasets that are linked and made available on a routine basis to the research community. The clinical practice research datalink cprd is an ongoing primary care database of anonymised medical records from general practitioners gps and has been the basis of 886 published papers in the last 5 years. Data from patients who have registered to optout at a contributing practice are not provided to cprd. Characteristics of state data linkage systems motor vehicle. The clinical practice research datalink cprd, known as the general practice research database gprd until march 2012, is a primary care database in the united kingdom with links to other data resources such as cancer and death registries and hospital event statistics. Data linkage is enabled by nhs digital, the statutory body in england legally permitted to receive patient identifiable data. An sql algorithm implementing these recommendations is provided. Cprd aurum is a database containing routinely collected data from primary care practices in england, capturing diagnoses, symptoms, prescriptions, referrals and tests for over 19.
Cprd gold september 2019 summary an updated version of the cprd gold database data sourced from gp practices using vision gp software is now available, which contains the following. The cprdonsutil package is designed for use with the cprdutil package, which creates stata datasets from text data files produced by the clinical practice research datalink cprd. The cprd utilises the maximum benefit of linked data sets and the uks health system to provide researchers with access to high quality anonymous primary and secondary health care data. Characteristics, service use and mortality of clusters of. Fundamental to the work of the cprd is the collection and linkage of anonymised data sets and provision of research services. The accuracy of date of death recording in the clinical. Launch of the clinical practice research datalink gov. How clinical practice research datalink data are used to. Apr 20, 2020 if nothing happens, download github desktop and try again. Guidelines reconciling cprd gold and ons linked mortality data were developed.
Other practices wishing to join the cprd will be able to do so during the first quarter of 2019. The specific advantages of cprd data are discussed in the context of the six vs of big data including volume, velocity, variety, veracity, validity and value. Australia is one of few countries that has invested significantly in the creation of data linkage facilities. Including primary care data from multiple software systems in a data linkage programme. Cprd aurum are linked to other patientlevel health data by a trusted third party, nhs digital, using nhs number, exact date of birth, sex and patient residence postcode linkage methodology details are described in padmanabhan et al. Cprd has a deterministic record linkage scheme using the nhs number which both increases and enhances the available data on patient care, diseases and conditions by linking to additional data sources, including hospitalisation data hospital episode statistics, death registration data. Australian endeavour to link data began in the 1970s in western australia and led to the creation of the wa data linkage unit in 1995. Risk of postdischarge venous thromboembolism and associated mortality in general surgery. Linking cprd data to other sources improves the range and validity of research studies.
The linkdate does not affect the availability of persontime in the cprd primary care data or the linkage data. How can the clinical practice research datalink cprd. Link plus selftraining manual for linkage developed by northwest tribal registry project staff, northwest portland area indian health board disclaimer. An understanding of record linkage methods and the relevant strengths and limitations is important for robust analysis and interpretation of linked data. Using data from the general practice research database gprd, a precursor to cprd, christian abnet, ph. It is jointly funded by the national institute for.
Approach to record linkage of primary care data from. Record linkage is defined as the process of identifying records on two or more datasets that refer to the same entity across various data sources such as databases, crms, and social media platforms. Risk of postdischarge venous thromboembolism and associated. A populationbased cohort study using linked hospital and primary care data in england.
The cprdhesaeutil package is designed for use with the cprdutil package, which creates stata datasets from text data files produced by the clinical practice research datalink cprd. Due to some differences in structure and clinical coding in these two systems, these data are provided as two separate primary care databases at present with accompanying metadata and advice to enable researchers to make studyspecific decisions on how best to pool these data. Researchers are also able to request linkages to additional nonprimary care data sets through cprd. Data are recorded as part of routine clinical practice. Link plus is a record linkage tool for cancer registries. Gp supplier tpp has announced it will be collaborating with clinical practice research datalink cprd to provide pseudonymised data for health research.
The term data matching is used to indicate the procedure of bringing together information from two or more records that are. Discover new connections and unearth insights with record linkage software even when the records in question are in different formats and have no. This unofficial manual was developed for internal training, and is not sanctioned by cdc or link plus. Sep 15, 2018 record linkage is increasingly used to expand the information available for public health research. Cprd formerly the general practice research database is the worlds largest validated computerized database of anonymized longitudinal medical records for primary care. Gave advicesoftware of record linkage methods to census bureau program divisions. Progress assessing cancer risk using cprd national. Record linkage is the term used by statisticians, epidemiologists, and historians, among others, to describe the process of joining records from one data source with another that describe the same entity. Cprd creates two separate linkage data sets for cprd gold and cprd aurum with metadata detailing linkage validity and match quality. Oct 31, 2011 launch of the clinical practice research datalink. Exploiting the potential of large databases of electronic.
Cprd clinical trial software data instance 2 online banking security. Mar 25, 2019 the clinical practice research datalink cprd is an ongoing primary care database of anonymised medical records from general practitioners gps and has been the basis of 886 published papers in the last 5 years. Observational research undertaken using cprd data must be for public health purposes and approved by an independent scientific. Further work to refine the register and to extend it to data contributed by practices using emis software cprd aurum is ongoing. Further information about set 17 and how cprd provides routine data linkages between primary care and other healthrelated patient datasets is available on our linked data. Clinical practice research datalink cprd 11 if you would like to allow this type of data to be collected, you must give consent via the crpd record linkage data collection screen. We have conducted a cohort study using data from the populationbased national cancer registry linked to cprd gprd data for patients with an incident colon or rectal. Identifiers are removed prior to transfer of data to cprd to protect patient confidentiality. Specification documents for the two databases can be found at the cprd website.
Cprd has established a data linkage programme that routinely links primary care data to other patientlevel health data from data custodians nhs digital and public health england phe. Cprd clinical practice research datalink provides real. The cprd builds on its predecessors capabilities and aims to provide a range of services and products in the areas of medical research and public health care. Linkage data is available for patients from 411 cprd gold contributing practices based on the vision software system and 800 cprd aurum contributing practices based on emis software. Genesis data management in healthcare research cprd. If nothing happens, download github desktop and try again. Data management in healthcare research cprd clinical practice research datalink john. Patient identity will be protected using a strongly pseudonymised linkage process, with an encrypted delivery mechanism. Cprd to link primary care data to other patient level datasets, and the potential implications of this approach for cprd data analysis. Do colorectal cancer patients diagnosed as an emergency. Tpp announces collaboration with clinical practice. Primary care data signposting cprd, thin and other databases evangelos evan kontopantelis1 1institute of population health, university of manchester oxford, 21 sep 2015 kontopantelis iph data. The additional clinical details file additionalnnn.
Clinical practice research datalink cprd is a realworld research service supporting retrospective and prospective public health and clinical studies. Sep 25, 2019 in 20, the centers for disease control and prevention cdc and the national highway traffic safety administration nhtsa conducted a joint study to increase knowledge about state data linkage systems, including nhtsas crash outcome data evaluation system codes. Primary care data collected from vision gp clinical software. Here, we describe the approach used by clinical practice research datalink cprd to link primary care data to other patient level datasets. Linkage correctness likelihood and data discrepancies were addressed. It is an easytouse, standalone application for microsoft windows that can run in two modes. These data are provided as two separate databases cprd gold and cprd aurum respectively with metadata. Commercial mail and database applications refer to it as mergepurge processing or list washing. The data is coded using read codes, which allow linkage of codes to the medical terms provided.
Data linkage in england is carried out by the trusted third party nhs digital. Cprd data was found to be used most commonly by researchers conducting studies in the pharmacology specialty area, implying its importance for pharmacoepidemiological and drug safety research and its management by the uk medicines regulator, the mhra. Gp practices using tpps systmone solution will be able to send the deidentified patient data on a daily basis to cprd. Approach to record linkage of primary care data from clinical. Primary care data collected from vision gp clinical software data are recorded as part of routine clinical practice coded data, free text practices assessed for quality of data recording feedback provided to gps to improvestandardise recording data anonymised at practice, then uploaded to cprd servers for. Link plus is a probabilistic record linkage program developed at cdcs division of cancer prevention and control in support of cdcs national program of cancer registries npcr. Data linkage has been defined as the bringing together from two or more different sources, data that relate to the same individual, family, place or event. The latest set of linkage data, referred to as set 17, is available for both cprd gold, based on the vision software system, and cprd aurum, based on emis software. These linkages cover approximately 75% of contributing cprd gold practices in the january 2019 build and located in.
Cprd and nhs digital have a data sharing agreement in place governing the linkage. From the vision front screen, click on modules and select crpd data. The high quality of cprd data has been extensively documented. Cprd, which will be fully established by 1 april 2012.
The clinical practice research datalink cprd is an ongoing primary care database of anonymised medical records from general practitioners gps and has been the basis of 886 published. Cprd collects deidentified patient data from a network of gp practices across the uk. Outputs and growth of primary care databases in the united. Oct 16, 2018 consenting practices, which are part of a pilot roll out, will start submitting data from november 2018. As of june 2018, cprd gold linkage data include patients from 411 practices 56% of contributing cprd. Clinical practice research datalink cprd is a uk government, notforprofit research service that has been supplying anonymized primary care data for public health research for more than 30 years. The clinical practice research datalink cprd is an observational and interventional research service that operates as part of the uk department of health. This manuscript, together with metadata generated on match strength and linkage eligibility, can be used to inform. Our group has recently completed two cluster randomized trials using the cprd.
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