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AIM: Linking information on family members in the Danish Civil Registration System (CRS) with information in Danish national registers provides unique possibilities for research on familial aggregation of diseases, health patterns, social factors and demography. However, the CRS is limited in the number of generations that it can identify. To allow more complete familial linkages, we introduce the lite Danish Multi-Generation Register (lite MGR) and the future full Danish MGR that is currently being developed. METHODS: We generated the lite MGR by linking the current version of the CRS with historical versions stored by the Danish National Archives in the early 1970s, which contain familial links not saved in the current CRS. We describe and compare the completeness of familial links in the lite MGR and the current version of the CRS. We also describe planned procedures for generating the full MGR by linking the current CRS with scanned archived records from Parish Registers. RESULTS: Among people born in Denmark in 1960 or later, the current CRS contains information on both parents. However, it has limited parental information for people born earlier. Among the 732,232 people born in Denmark during 1950-1959, 444,084 (60.65%) had information on both parents in the CRS. In the lite MGR, it was 560,594 (76.56%). CONCLUSIONS: The lite MGR offers more complete information on familial relationships than the current CRS. The lite and full MGR will offer an infrastructure tying together existing research infrastructures, registers and biobanks, raising their joint research value to an unparalleled level.

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Background & objectives: In many developing countries including India, the civil registration data are incomplete, inadequate and not timely, therefore, compromising the usefulness of these data. The completeness of registration of death (CoRD) in the Indian Civil Registration System (CRS) was assessed from 2005 to 2015 at State level to understand its current status and trends over time and also to identify gaps in data to improve CRS data quality. Methods: CoRD for each year for each State was calculated from the CRS reports for 2005-2015. Data were analyzed nationally by geographic region and individual State. The availability of CoRD by age group and sex was also reported. Results: About 40 per cent increase in CoRD was documented for India between 2005 and 2015, with CoRD of 76.6 per cent in 2015. CoRD was >90 per cent in the western and southern regions and the eastern, central and northeastern regions had CoRD lower than the Indian average in 2015. Among the 29 States, 16 (55.2%) State had CoRD >80 per cent and five (17.2%) <50 per cent and 10 States recorded 100 per cent CoRD. Despite the highest per cent increase during 2005-2015 (108.5%), CoRD in Uttar Pradesh was 44.2 per cent in 2015. Varying levels of progress in 2015 were seen between the State with similar CoRD estimates in 2015. Nagaland (-63.3%), Manipur (-33.1%) and Tripura (-30.3%) were the only States that documented a decrease in CoRD during 2005-2015. The age non-availability for India ranged from 37.0 per cent in 2009 to 37.9 per cent in 2015, an average of 41.5 per cent over the seven years and was an average of 35.6 and 36.6 per cent for males and females, respectively. Age was available for all registered deaths only in five (17.2%) of the 29 States in 2009 and four (13.8%) in 2015. Sex non-availability for the recorded deaths was much lower as compared with that for age. Interpretation & conclusions: Despite the significant progress made in CoRD in India, critical differences between the States within the CRS remain, with poor availability of reporting by age and sex. Concentrated efforts to assess the strengths and weaknesses at the State level of the CRS processes, quality of data and plausibility of information generated are needed in India.

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In the health systems of many countries, there is neither a requirement to collect a minimum set of demographic information during patient registration nor a standard way of identifying patients. This impedes the provision of integrated, good-quality care for individual patients and, at the system level, prevents generation of the high-quality data necessary for effective management and continuous improvement. Assigning each patient a unique identifier (UID) to create a master patient index (MPI) is therefore essential to ensure data interoperability across all the points of patient care within a health system. Although advances in technology are shifting the boundary between civil registration and personal identification, the additional value of an MPI/UID system lies in the technical and operational capacity to ensure that clinical data are safely and securely managed. Moreover, operationalization of MPI/UID data enables the establishment of an evidence-based, constantly improving "learning health system" with feedback loops that allow measurement, evaluation and visualization of performance over time. The Ministry of Health and Sports of Myanmar is actively engaged in a multistakeholder collaborative process working towards a nationwide MPI/UID system. Demonstration pilots are planned for both online and offline modes of operation for HIV/AIDS, mother and child health (including eliminating mother-to-child transmission of HIV and syphilis) and hospital settings, which are expected to open up the potential for expansion to all health interventions and facilities. With the implementation of the MPI/UID system under way in Myanmar, the Ministry of Health and Sports is laying the foundation to put individuals at the centre of care and deliver a lifelong service for all.

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BACKGROUND: Streptococcus pneumoniae and Neisseria meningitidis are frequent pathogens in life-threatening infections. Genetic variation in the immune system may predispose to these infections. Nuclear factor-κB is a key component of the TLR-pathway, controlled by inhibitors, encoded by the genes NFKBIA, NFKBIE and NFKBIZ. We aimed to replicate previous findings of genetic variation associated with invasive pneumococcal disease (IPD), and to assess whether similar associations could be found in invasive meningococcal disease (IMD). METHODS: Cases with IPD and IMD and controls were identified by linking Danish national registries. DNA was obtained from the Danish Neonatal Screening Biobank. The association between SNPs and susceptibility to IPD and IMD, mortality and pneumococcal serotypes was investigated. RESULTS: 372 children with pneumococcal meningitis, 907 with pneumococcal bacteremia and 1273 controls were included. We included 406 cases with meningococcal meningitis, 272 with meningococcal bacteremia, and 672 controls. The NFKBIE SNP was associated with increased risk of pneumococcal meningitis (aOR 1.68; 95% CI: 1.20-2.36), but not bacteremia (aOR 1.08; 95% CI: 0.86-1.35). The remaining SNPs were not associated with susceptibility to invasive disease. None of the SNPs were associated with risk of IMD or mortality. CONCLUSIONS: A NFKBIE polymorphism was associated with increased risk of pneumococcal meningitis.

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The purpose of the study was to estimate the risk of substance use disorder (SUD) and alcohol abuse in adulthood among children and adolescents with attention-deficit hyperactivity disorder (ADHD) compared to the background population. Furthermore, to examine whether the age at initiation and duration of stimulant treatment in childhood predicts SUD and alcohol abuse in adulthood. 208 youths with ADHD (183 boys; 25 girls) were followed prospectively. Diagnoses of SUD and alcohol abuse were obtained from The Danish Psychiatric Central Register. The relative risk (RR) of SUD and alcohol abuse for cases with ADHD, compared to the background population was 7.7 (4.3-13.9) and 5.2 (2.9-9.4), respectively. Female gender, conduct disorder in childhood and older age at initiation of stimulant treatment increased the risk of later SUD and alcohol abuse. Our results warrant increased focus on the possibly increased risk of substance abuse in females with ADHD compared to males with ADHD.

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