Proposed new diagnostic criteria for chronic migraine.

INTRODUCTION: ICHD-3 criteria for chronic migraine (CM) include a mixture of migraine and tension-type-like headaches and do not account for patients who have a high frequency of migraine but no other headaches. MATERIALS AND METHODS: Patients from the Danish Headache Center and their relatives with ICHD-3 defined CM were compared with patients with high frequency episodic migraine (HFEM). Danish registries were used to compare the socioeconomic impact in these two groups. A Russian student population was used to determine the generalizability of the number of patients fulfilling CM and the proposed diagnostic criteria for CM. RESULTS: There was no difference in the demographic profile between the two groups in the Danish cohort. The number of lifelong or annual attacks (p > 0.3), comorbid diseases, or self-reported effect of triptans (p = 1) did not differ. HFEM patients purchased more triptans than CM patients (p = 0.01). CM patients received more early pension (p = 0.00135) but did not differ from HFEM patients with regard to sickness benefit (p = 0.207), cash assistance (p = 0.139), or rehabilitation benefit (p = 1). DISCUSSION: Patients with HFEM are comparable to CM patients with regard to chronicity and disability. We therefore suggest classifying CM as ≥ 8 migraine days per month (proposed CM), disregarding the need for ≥ 15 headache days per month. The proposed diagnostic criteria for CM approximately doubled the number of patients with CM in both the Danish and the Russian materials. Extending the definition of CM to include patients with HFEM will ensure that patients with significant disease burden and unmet treatment needs are identified and provided appropriate access to the range of treatment options and resources available to those with CM. CONCLUSION: Patients with migraine on eight or more days but not 15 days with headache a month are as disabled as patients with ICHD-3 defined CM. They should be included in revised diagnostic criteria for chronic migraine.

Registro Español de Imagen Cardiaca. I Informe Oficial de la Sección de Imagen Cardiaca de la Sociedad Española de Cardiología (2017) / Spanish Cardiovascular Imaging Registry. First Official Report of the Spanish Society of Cardiology Working Group on Cardiovascular Imaging (2017)

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Enhance quality care performance: Determination of the variables for establishing a common database in French paediatric critical care units.

Selected variables for the French Paediatric Intensive Care registry. RATIONALE, AIMS, AND OBJECTIVES: Providing quality care requires follow-up in regard to clinical and economic activities. Over the past decade, medical databases and patient registries have expanded considerably, particularly in paediatric critical care medicine (eg, the Paediatric Intensive Care Audit Network (PICANet) in the UK, the Australian and New Zealand Paediatric Intensive Care (ANZPIC) Registry in Australia and New Zealand, and the Virtual Paediatric Intensive Care Unit Performance System (VPS) in the USA). Such a registry is not yet available in France. The aim of this study was to determine variables that ought to be included in a French paediatric critical care registry. METHODS: Variables, items, and subitems from 3 foreign registries and 2 French local databases were used. Items described each variable, and subitems described items. The Delphi method was used to evaluate and rate 65 variables, 90 items, and 17 subitems taking into account importance or relevance based on input from 28 French physicians affiliated with the French Paediatric Critical Care Group. Two ratings were used between January and May 2013. RESULTS: Fifteen files from 10 paediatric intensive care units were included. Out of 65 potential variables, 48 (74%) were considered to be indispensable, 16 (25%) were considered to be optional, and 1 (2%) was considered to be irrelevant. Out of 90 potential items, 62 (69%) were considered to be relevant, 23 (26%) were considered to be of little relevance, and 5 (6%) were considered to be irrelevant. Out of 17 potential subitems, 9 (53%) were considered to be relevant, 6 (35%) were considered to be of little relevance, and 2 (12%) were considered to be irrelevant. CONCLUSIONS: The necessary variables that ought to be included in a French paediatric critical care registry were identified. The challenge now is to develop the French registry for paediatric intensive care units.

Registro de linfomas cutáneos primarios de la AEDV / AEDV primary cutaneous lymphoma registry

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The importance of registries in cancer control.

Cancer is one of the major causes of morbidity and mortality in the world, with 14.1 million new cases and 8.2 million deaths annually. A marked disparity exists between developed countries and developing countries, with 57% of new cases and 65% of deaths in 2012 occurring in developing countries. This global picture can only be obtained because of data obtained from population-based cancer registries, which allow cancer estimations for different geographic areas. Our objective is to perform a review of different types of registries and their role in the control of cancer. These types of registries are lacking in developing countries. In Central and South America, only 6% of the population is included in cancer registries versus 83% in North America. It is necessary to increase the coverage of cancer registries to obtain more reliable data that will more appropriately guide control programs.

[Pre-requisites, observations and benefits of the DGU trauma registry in Austria]. / Voraussetzungen, Erfahrungen und Nutzen des Traumaregisters der DGU in Österreich.

The trauma registry of the DGU was founded in 1992 with the objective of collecting data on severely injured patients. The purpose of this registry, in which Austrian trauma units have taken part since 1998, is to answer questions related to the field of trauma management. Using the example of the Linz Trauma Center (UKH Linz), which has actively participated since 2012, the authors would like to share their experiences of collecting data in order to motivate other departments to participate in the trauma registry. We would like to make suggestions regarding implementation methods for high-quality data acquisition.However, the availability of essential human resources must be guaranteed, since the recording of data from severely injured patients sometimes takes 60-90 min. Additionally, an automatic data acquisition method is currently unavailable for technical reasons.

[Treatment of severely injured patients : Impact of the German Trauma Registry DGU®]. / Versorgung Schwerverletzter in Deutschland : Einfluss des TraumaRegister DGU®.

The German Trauma Registry DGU® started in 1993 as an initiative of five dedicated trauma centers and has evolved significantly since then. Data were obtained at four points of time from the site of the accident until discharge from hospital. In the first year (1993), the registry collected data of 260 patients from 5 hospitals. In 2015 more than 38.000 were included from 640 hospitals.This paper focusses on the impact of the trauma registry on the treatment of severely injured patients. Several authors could show that the data can be used by hospitals for benchmarking. This can help to detect problems in individual hospitals and to find solutions that can be implemented into the process of care and its subsequent reevaluation. Due to structural and process-related changes, the time necessary for the management in the emergency room could be reduced significantly. Various scientific analyses of the Trauma Registry DGU® data were implemented in the treatment of severely injured patients. In the prehospital treatment, this changed the criteria for intubation and led to a reduction of volume replacement. In the hospital setting, the analysis influenced the radiologic work-up and the treatment of coagulopathy of severely injured patients. Moreover, the risk-adjusted mortality of severely injured patients in Germany could be continuously reduced over the past 20 years.

[What can we learn in future from the data of the German Arthroplasty Registry (EPRD) in comparison to other registries?]. / Welcher Zusatznutzen ergibt sich in Zukunft aus den Daten des EPRD im Vergleich zu anderen Registern?

The German Arthroplasty Registry (EPRD) was founded in 2010 and has been in full operation since 2014. Previous attempts at a systematic data collection of elective and non-elective knee and hip replacement in Germany failed mainly because of the long-term lack of funding. The EPRD is an interdisciplinary collaborative partnership between the German Association of Orthopedics and Orthopedic Surgery (DGOOC), all implant manufacturers of the German Medical Technology Association (BVMed), health insurers (AOK and the Association of Additional Healthcare Insurance) and hospitals (German Hospital Federation). As part of this cooperation a worldwide unique implant database has been set up, which includes all relevant components and a detailed description of implant specifications. This implant library enables a detailed evaluation of implant survival, revision rates and possible inferior implant performance of knee and hip replacements in Germany. At the end of 2015 the EPRD encompassed over 200,000 registered operations. Due to the high number of hip and knee arthroplasties in Germany with many different implants from different manufacturers there will be a rapid growth of data that are available for a national and also international comparison of the results.

[What can and cannot be achieved by registries : Perspective of the registry working group of the German Network of Health Services Research]. / Was Register leisten können und was nicht : Sicht der AG Register des Deutschen Netzwerks Versorgungsforschung e. V. (DNVF).

In addition to clinical trials, registries and cohort studies are the fundamental basis of patient-orientated research. The importance of registries is increasing because more questions involving patient care under routine conditions (real world data) need to be answered. This article supplies answers to the questions: what can be achieved with registries and what are the limitations? Starting with a consensus definition of a registry from the German Network of Health Services Research (DNVF), the question of existing registries was examined and it was concluded that there was a lack of transparency. Consequently, a registry of registries similar to clinical trials registries is urgently needed as well as an evaluation of the quality of existing registries. Criteria are deduced that allow an assessment of the quality of a registry and which comprehensive possibilities registries can provide are discussed in eight different areas of interest to clinicians. The limitations of registries compared to randomized clinical trials and cohort studies are emphasized and discussed in this article. In the future, the use of registry-based randomized clinical trials (RRCT) will allow data related to efficacy as well as to effectiveness to be collated.

[Influence of the pelvic trauma registry of the DGU on treatment of pelvic ring fractures]. / Einfluss des Beckenregisters der DGU auf die Versorgung von Beckenringfrakturen.

Fractures of the pelvic ring are comparatively rare with an incidence of 2-8 % of all fractures depending on the study in question. The severity of pelvic ring fractures can be very different ranging from simple and mostly "harmless" type A fractures up to life-threatening complex type C fractures. Although it was previously postulated that high-energy trauma was necessary to induce a pelvic ring fracture, over the past decades it became more and more evident, not least from data in the pelvic trauma registry of the German Society for Trauma Surgery (DGU), that low-energy minor trauma can also cause pelvic ring fractures of osteoporotic bone and in a rapidly increasing population of geriatric patients insufficiency fractures of the pelvic ring are nowadays observed with no preceding trauma.Even in large trauma centers the number of patients with pelvic ring fractures is mostly insufficient to perform valid and sufficiently powerful monocentric studies on epidemiological, diagnostic or therapeutic issues. For this reason, in 1991 the first and still the only registry worldwide for the documentation and evaluation of pelvic ring fractures was introduced by the Working Group Pelvis (AG Becken) of the DGU. Originally, the main objectives of the documentation were epidemiological and diagnostic issues; however, in the course of time it developed into an increasingly expanding dataset with comprehensive parameters on injury patterns, operative and conservative therapy regimens and short-term and long-term outcome of patients. Originally starting with 10 institutions, in the meantime more than 30 hospitals in Germany and other European countries participate in the documentation of data. In the third phase of the registry alone, which was started in 2004, data from approximately 15,000 patients with pelvic ring and acetabular fractures were documented. In addition to the scientific impact of the pelvic trauma registry, which is reflected in the numerous national and international publications, the dramatically changing epidemiology of pelvic ring fractures, further developments in diagnostics and the changes in operative procedures over time could be demonstrated. Last but not least the now well-established diagnostic and therapeutic algorithms for pelvic ring fractures, which could be derived from the information collated in registry studies, reflect the clinical impact of the registry.

[Registries of the German Society for Orthopaedics and Trauma : Overview and perspectives of the DGU and DGOOC registries]. / Die Register der DGOU : Übersicht und Perspektiven der DGU- und DGOOC-Register.

The register network of the German Society for Orthopaedics and Trauma (DGOU) consists of 14 registries that cover the various fields of traumatology and elective orthopedics. In addition to registries that focus on implants and types of diseases without age limitations, there are also registries dealing with special diseases in children and adolescents as well as the special needs of elderly patients with fractures. The registries serve as instruments for outcome research and quality assurance and can be used to develop treatment recommendations on a high level of evidence. The objective of the network is to exchange experience that facilitates the establishment of new registers, to pool expertise and to conserve resources.

[Influence of registries on the quality of care]. / Einfluss von Registern auf die Versorgungsqualität.

Registries are a topic of lively debate amongst all stakeholders in healthcare, politics and economics. In general, registries are national or international (prospective) databases documenting the current state of diagnostic, therapeutic and long-term outcome variables of subjects with a distinct condition or health problem. The access to and handling of registry information is subject to strict legal, methodological and ethical principles and regulations before these data can be scientifically utilized and reentered into the routine daily practice. Because of the representativeness and reality of data, registries are widely regarded as the backbone of health systems and budgets.Currently there is only indirect evidence that registries influence outcomes and the quality of care. Recent statistical techniques may allow quasi-experimental modelling of observational information. In orthopedic and trauma surgery, current and upcoming registries should be wisely utilized to develop and evaluate innovations and to make informed decisions relevant to care.

The importance of registries in cancer control / Importancia de los registros para el control del cáncer

Abstract Cancer is one of the major causes of morbidity and mortality in the world, with 14.1 million new cases and 8.2 million deaths annually. A marked disparity exists between developed countries and developing countries, with 57% of new cases and 65% of deaths in 2012 occurring in developing countries. This global picture can only be obtained because of data obtained from population-based cancer registries, which allow cancer estimations for different geographic areas. Our objective is to perform a review of different types of registries and their role in the control of cancer. These types of registries are lacking in developing countries. In Central and South America, only 6% of the population is included in cancer registries versus 83% in North America. It is necessary to increase the coverage of cancer registries to obtain more reliable data that will more appropriately guide control programs.

Resumen El cáncer es una de las principales causas de morbi-mortalidad en el mundo con 14.1 millones de casos nuevos y 8.2 millones de muertes. Existe marcada disparidad entre países desarrollados y en vías de desarrollo: 57% de los casos nuevos y 65% de las muertes registradas en 2012 ocurrieron en países en vías de desarrollo. Sólo es posible describir este panorama mundial a partir de los datos obtenidos de los registros poblacionales de cáncer, que permiten realizar estas estimaciones en las diferentes áreas geográficas. El objetivo de este trabajo es realizar una revisión sobre los diferentes tipos de registros y su papel en el control del cáncer. En los países en vías de desarrollo existe una notable carencia de este tipo de registros. En Centro y Sur América sólo 6% de la población cuenta con registros de cáncer frente a 83% en América del Norte. Es necesario ampliar la cobertura de los registros de cáncer para la obtención de datos más confiables que guíen más oportunamente los programas de control.

Prevalence and Data Transparency of National Clinical Registries in the United States.

OBJECTIVE: To determine the prevalence and characteristics of national clinical registries. METHODS: Review of clinical registries through the following: (1) PubMed search using MeSH term "registries," (2) clinical trials database search using the term "registry," (3) review of the American Medical Association (AMA) recognized specialty societies for registry affiliation, and (4) consultation with a panel representing the American Board of Medical Specialties (ABMS). MAIN OUTCOME MEASURES: Outcomes that characterize registries (type, participants, specialty affiliation, funding), reflect data quality (risk adjustment, auditing practices), and indicate transparency (public reporting). RESULTS: We identified 153 clinical registries of which 47.7% (73) were health services registries, 43.1% (66) were disease registries, and 9.2% (14) were combination registries. The mean number of hospitals per registry was 1,693 (interquartile range [IQR] = 45-230), and the mean number of patients per registry was 1,160,492 (IQR = 2,150-10,045). Among the 117 AMA specialty societies, 16.2% (19) were affiliated with a registry. Government funding was associated with 26.1% (40/153) of registries. Of the 153 registries, 23.5% (36) risk adjusted outcomes and 18.3% (23) audited data. Mandatory public reporting of hospital outcomes for all participating hospitals was associated with 2.0% (3/153) of registries. CONCLUSION: There is substantial opportunity to develop more specialty-specific clinical registries with publicly available data.

Can linking databases answer questions about paediatric heart failure?

Numerous data sets collect information on patients with paediatric cardiovascular disease, including paediatric heart failure and transplant patients. This review discusses methodologies available for linking and integrating information across data sets, which may help facilitate answering important questions in the field of paediatric heart failure and transplant that cannot be answered with individual data sets or single-centre data alone.