Results of standard patch tests performed with the same methodology in one centre are rarely available over a large time span. This gives the unique opportunity to study not only prevalence but also persistency of contact allergy and characterize subpopulations. The objectives were to investigate sensitivity rates and persistencies of patch test results and characterize patients with multiple contact allergies. A 20-year retrospective database-based study of 14 998 patients patch tested with the European Standard Series was performed. 34.5% were sensitized, primarily women. Sensitivity to nickel was most frequent and least frequent to mercaptobenzothiazole, N-isopropyl-N-phenyl-p-phenylenediamine and benzocaine. Yearly proportion of negative, mono/double-allergic, and multiple-allergic cases remained stable. Persistency of positive reactions was high for para-phenylenediamine, Cl(Me)isothiazolinone, and primin and poor for paraben mix. 5.1% were multiple allergic, primarily women, and 90% got diagnosed by the first test. Frequency of multiple allergies increased with age. More multiple- than mono/double-allergic patients were tested multiple times. Persistency and sensitivity rates in a Danish eczema population are provided and are useful for decisions regarding the standard series. Patients with multiple contact allergies are typically elderly women who might have long-lasting and hard-to-treat eczema. Cumulative environmental exposure seems necessary to develop multiple allergies.
This quality assurance project was designed to determine the reliability, completeness and comprehensiveness of the data entered into Niday Perinatal Database.
Quality of the data was measured by comparing data re-abstracted from the patient record to the original data entered into the Niday Perinatal Database. A representative sample of hospitals in Ontario was selected and a random sample of 100 linked mother and newborn charts were audited for each site. A subset of 33 variables (representing 96 data fields) from the Niday dataset was chosen for re-abstraction.
Of the data fields for which Cohen's kappa statistic or intraclass correlation coefficient (ICC) was calculated, 44% showed substantial or almost perfect agreement (beyond chance). However, about 17% showed less than 95% agreement and a kappa or ICC value of less than 60% indicating only slight, fair or moderate agreement (beyond chance).
Recommendations to improve the quality of these data fields are presented.
Danish Pain Research Center, Aarhus University Hospital, Aarhus, Denmark; Department of Neurosurgery, Aarhus University Hospital, Aarhus, Denmark; Department of Anesthesiology, Aarhus University Hospital, Aarhus, Denmark; ITmedico, Aarhus, Denmark; Perinatal Epidemiology Research Unit, Aarhus University Hospital, Aarhus, Denmark; and Department of Neurology, Aarhus University Hospital, Aarhus, Denmark.
?? Spinal cord stimulation (SCS) is increasingly gaining widespread use as a treatment for chronic pain. A widely used electronic registry could play a pivotal role in improving this complex and cost-?intensive treatment. We aimed to construct a comprehensive, universally available data base for SCS.
?? The design considerations behind a new online data base for SCS are presented; basic structure, technical issues, research applications, and future perspectives are described.
?? The Aarhus Neuromodulation Database covers core SCS treatment parameters, including procedure-?related details and complications, and features recording of key success parameters such as pain intensity, work status, and quality of life. It combines easy access to patient information with exhaustive data extraction options, and it can readily be adapted and expanded to suit different needs, including other neuromodulation treatment modalities.
?? We believe that the data base described in this article offers a powerful and versatile data collection tool suited for both clinicians and researchers in the field. The basic data base structure is immediately available on a no?-cost basis, and we invite our colleagues to make use of the data base as part of the efforts to further the field of neuromodulation.
Wilhelm Johannsen Centre for Functional Genome Research, Department of Cellular and Molecular Medicine, Panum Institute, University of Copenhagen, Copenhagen, Denmark.
In the last decades, an increasing rate of gastroschisis but not of omphalocele has been reported worldwide. Greenland is the world's largest island, but 80% is covered by an ice cap, it has a small population of around 56,000 peoples (as of 2016). The occurrence of abdominal wall defects has never been investigated in Greenland.
The present study is based on data retrieved from three nationwide and two local registries in the Greenlandic health care system over 27 years (1989-2015).
We identified 33 infants with abdominal wall defects born in the study time period. All cases were reclassified to 28 cases of gastroschisis, four cases of omphalocele, and there was 1 infant in the indeterminate group. The point prevalence at birth for gastroschisis increased significantly from 8 to 35 (average 10.7) per 10,000 liveborn and -stillborn infants. Mothers below 20 years of age represented 23% of all cases and the prevalence for this group was 17 per 10,000 liveborn and stillborn. Perinatal mortality for infants with gastroschisis was high (18%), and 1 year survival was 71%. For omphalocele, the prevalence varied from 8 to 11 per 10,000 liveborn and stillborn infants. There was no increasing rate in the period, further highlighting an etiological difference between gastroschisis and omphalocele.
The high rate of youth suicide in some First Nations villages of Northern Quebec is an important public health problem. Based on a six-year field study in three villages belonging to the Atikamekw and Anishinabe groups, this paper proposes changes in three areas of social policy that could contribute to prevention of youth suicide. These three areas are: youth protection, administration of justice, and housing. An argument is made first to adapt the youth protection law of Quebec and to give greater responsibility to communities in individual cases in order to prevent child placement outside the villages. Regarding the administration of justice, we suggest initiatives to encourage rapid prosecution of crimes on reserves and the adoption of an approach based on reconciliation between perpetrator and victim. Finally, we indicate how housing measures could help safeguard children's wellbeing given that overcrowding can contribute to suicide. The discussion also proposes that these three key changes in social policy could be relevant in other Aboriginal communities both within and outside of Quebec.
Currently, researchers have to apply separately to individual biobanks if they want to carry out studies that use samples and data from multiple biobanks. This article analyzes the access governance arrangements of the original five biobank members of the Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU) project in Finland, Germany, the Netherlands, Norway, and the United Kingdom to identify similarities and differences in policies and procedures, and consider the potential for internal policy "harmonization." Our analysis found differences in the range of researchers and organizations eligible to access biobanks; application processes; requirements for Research Ethics Committee approval; and terms of Material Transfer Agreements relating to ownership and commercialization. However, the main elements of access are the same across biobanks; access will be granted to bona fide researchers conducting research in the public interest, and all biobanks will consider the scientific merit of the proposed use and it's compatibility with the biobank's objectives. These findings suggest potential areas for harmonization across biobanks. This could be achieved through a single centralized application to a number of biobanks or a system of mutual recognition that places a presumption in favor of access to one biobank if already approved by another member of the same consortium. Biobanking and Biomolecular Resources Research Infrastructure-European Research Infrastructure Consortia (BBMRI-ERIC), a European consortium of biobanks and bioresources with its own ethical, legal, and social implications (ELSI) common service, could provide a platform by developing guidelines for harmonized internal processes.
ABSTRACTOne of the keys to the success of the Canadian Longitudinal Study on Aging (CLSA) will be the leveraging of secondary data sources, particularly health care utilization (HCU) data. To examine the practical, methodological, and ethical aspects of accessing HCU data, one-on-one qualitative interviews were conducted with 53 data stewards and privacy commissioners/ombudsmen from across Canada. Study participants indicated that obtaining permission to access HCU data is generally possible; however, they noted that this will be a complex and lengthy process requiring considerable and meticulous preparatory work to ensure proper documentation and compliance with jurisdictional variations along legislative and policy lines.
Pharmacoepidemiology and Pharmacoeconomics Research Unit, Centre de Recherche, Campus Hôtel-Dieu, Centre Hospitalier de l'Université de Montréal, Montreal, Quebec, Canada.
In Quebec, MED-ECHO database can be used to estimate inhospital length of stay (LOS) and number of hospitalizations (NOH) both accurately and reliably. However, access to MED-ECHO database is time-consuming. Quebec medical claims database (RAMQ) can be used as an alternative source to estimate these measures. Considering MED-ECHO as the 'gold standard,' this study examined the validity of using RAMQ medical claims to estimate LOS and NOH.
We used a cohort of 3768 elderly patients with chronic obstructive pulmonary disease (COPD) between 1990 and 1996 and identified those with inhospital claims. Inhospital LOS was defined as the total number of days with inhospital claims. Various grace periods (1-15 days) between consecutive claims were considered for the estimation of LOS and NOH. RAMQ and MED-ECHO databases were linked using unique patient identifiers. Estimates obtained from RAMQ data were compared to those from MED-ECHO using various measures of central tendency and predictive error estimates.
Overall, 32.7% of patients were hospitalized at least once during the study period based on RAMQ claims, as compared to 32.0% in MED-ECHO ( p-value = 0.51). The best estimates [mean (p-value)] were found to be those obtained when using a 7-day grace period. RAMQ versus MED-ECHO estimates were: 12.2 versus 13.5 days (
The first link in the 'chain of survival' is the activation of Emergency Medical Services (EMS). In the major part of Denmark, police officers operate the alarm 1-1-2 centre, including calls for EMS. Our aim was to study the police 1-1-2 operators' accuracy in identifying calls concerning patients with loss of consciousness as a key symptom of life-threatening conditions. 'Unconsciousness' was defined as patients with a Glasgow Coma Scale (GCS) score of or = 9, 972 of whom were reported 'awake', giving a specificity of 72%. The positive predictive value (percentage of patients found with a GCS score of
