Dataset Information

Cohort profile: the PHARMO Perinatal Research Network (PPRN) in the Netherlands: a population-based mother-child linked cohort.

ABSTRACT: PURPOSE:Observational population-based research is a very suitable non-invasive method for studies in the vulnerable populations of pregnant women and children. Therefore, the PHARMO Perinatal Research Network (PPRN) was set up as a resource for life course perinatal and paediatric research by linking population-based data from existing registrations. PARTICIPANTS:From 1999 to 2017, the PPRN captures approximately 542?900 pregnancies of 387?100 mothers ('Pregnancy Cohort'). Additionally, mother-child linkage is currently available for a quarter of these pregnancies ('Child Cohort'). The PPRN contains preconceptional information on maternal healthcare, as well as detailed pregnancy and neonatal data, extending into long-term follow-up and outcomes after birth for both mother and child up to nearly 20 years. It includes linked data from different primary and secondary healthcare settings. FINDINGS TO DATE:Through record linkage of the Netherlands Perinatal Registry and the PHARMO Database Network, we have established a large population-based research network including data on demographics, medication use, medical conditions and details concerning labour, birth and neonatal outcomes. Here, we provide an overview of record types available from the PPRN, available database follow-up and pregnancy characteristics of the PPRN cohorts. The PPRN has been used for a number of different pharmacoepidemiological studies, for example, to confirm that preterm-born infants were more likely than full-term infants to be hospitalised or use medication. Similar long-term comparisons showed that children born following spontaneous preterm labour were at increased risk of neurodevelopmental and respiratory conditions. Most recently, the PPRN provided important evidence on the trends in use of potentially harmful medication during pregnancy. FUTURE PLANS:The PPRN provides a unique and rich data set facilitating large-scale observational pharmacoepidemiological perinatal research. The patient-level linkage of many different healthcare data sources allows for long-term follow-up of mother and child, with ongoing annual updates.

SUBMITTER: Houben E

PROVIDER: S-EPMC7520848 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Cohort profile: the PHARMO Perinatal Research Network (PPRN) in the Netherlands: a population-based mother-child linked cohort.

Houben E E Broeders L L Steegers E A P EAP Herings R M C RMC

BMJ open 20200925 9

<h4>Purpose</h4>Observational population-based research is a very suitable non-invasive method for studies in the vulnerable populations of pregnant women and children. Therefore, the PHARMO Perinatal Research Network (PPRN) was set up as a resource for life course perinatal and paediatric research by linking population-based data from existing registrations.<h4>Participants</h4>From 1999 to 2017, the PPRN captures approximately 542 900 pregnancies of 387 100 mothers ('Pregnancy Cohort'). Additi ...[more]

PMID: 32978198

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Project description:ObjectiveTo assess the implementation and first results of a term perinatal internal audit by a standardised method.DesignPopulation-based cohort study.SettingAll 90 Dutch hospitals with obstetric/paediatric departments linked to community practices of midwives, general practitioners in their attachment areas, organised in perinatal cooperation groups (PCG).PopulationThe population consisted of 943 registered term perinatal deaths occurring in 2010-2012 with detailed information, including 707 cases with completed audit results.Main outcome measuresParticipation in the audit, perinatal death classification, identification of substandard factors (SSF), SSF in relation to death, conclusive recommendations for quality improvement in perinatal care and antepartum risk selection at the start of labour.ResultsAfter the introduction of the perinatal audit in 2010, all PCGs participated. They organised 645 audit sessions, with an average of 31 healthcare professionals per session. Of all 1102 term perinatal deaths (2.3/1000) data were registered for 86% (943) and standardised anonymised audit results for 64% (707). In 53% of the cases at least one SSF was identified. Non-compliance to guidelines (35%) and deviation from usual professional care (41%) were the most frequent SSF. There was a (very) probable relation between the SSF and perinatal death for 8% of all cases. This declined over the years: from 10% (n=23) in 2010 to 5% (n=10) in 2012 (p=0.060). Simultaneously term perinatal mortality decreased from 2.3 to 2.0/1000 births (p<0.00001). Possibilities for improvement were identified in the organisation of care (35%), guidelines or usual care (19%) and in documentation (15%). More pregnancies were antepartum selected as high risk, 70% in 2010 and 84% in 2012 (p=0.0001).ConclusionsThe perinatal audit is implemented nationwide in all obstetrical units in the Netherlands in a short time period. It is possible that the audit contributed to the decrease in term perinatal mortality.

Project description:PurposeThe Scottish Diabetes Research Network (SDRN)-diabetes research platform was established to combine disparate electronic health record data into research-ready linked datasets for diabetes research in Scotland. The resultant cohort, 'The SDRN-National Diabetes Dataset (SDRN-NDS)', has many uses, for example, understanding healthcare burden and socioeconomic trends in disease incidence and prevalence, observational pharmacoepidemiology studies and building prediction tools to support clinical decision making.ParticipantsWe estimate that >99% of those diagnosed with diabetes nationwide are captured into the research platform. Between 2006 and mid-2020, the cohort comprised 472 648 people alive with diabetes at any point in whom there were 4 million person-years of follow-up. Of the cohort, 88.1% had type 2 diabetes, 8.8% type 1 diabetes and 3.1% had other types (eg, secondary diabetes). Data are captured from all key clinical encounters for diabetes-related care, including diabetes clinic, primary care and podiatry and comprise clinical history and measurements with linkage to blood results, microbiology, prescribed and dispensed drug and devices, retinopathy screening, outpatient, day case and inpatient episodes, birth outcomes, cancer registry, renal registry and causes of death.Findings to dateThere have been >50 publications using the SDRN-NDS. Examples of recent key findings include analysis of the incidence and relative risks for COVID-19 infection, drug safety of insulin glargine and SGLT2 inhibitors, life expectancy estimates, evaluation of the impact of flash monitors on glycaemic control and diabetic ketoacidosis and time trend analysis showing that diabetic ketoacidosis (DKA) remains a major cause of death under age 50 years. The findings have been used to guide national diabetes strategy and influence national and international guidelines.Future plansThe comprehensive SDRN-NDS will continue to be used in future studies of diabetes epidemiology in the Scottish population. It will continue to be updated at least annually, with new data sources linked as they become available.

Project description:Mother-to-child transmission (MTCT) of Human T-cell lymphotropic virus type 1 (HTLV-1) causes lifelong infection. At least 5-10 million individuals worldwide are currently living with HTLV-1. Studies of regional variation are required to better understand the contribution of MTCT to the global burden of infection. Although most infected individuals remain asymptomatic ∼10% develop high morbidity, high mortality disease. Infection early in life is associated with a higher risk of disease development. Adult T-cell leukemia (ATL), which is caused by HTLV-1 and has a median survival of 8 months is linked to MTCT, indeed evidence of ATL following infection as an adult is sparse. Infective dermatitis also only occurs following neonatal infection. Whilst HTLV-1-associated myelopathy (HAM) follows sexual and iatrogenic infection approximately 30% of patients presenting with HAM/TSP acquired the infection through their mothers. HAM/TSP is a disabling neurodegenerative disease that greatly impact patient's quality of life. To date there is no cure for HTLV-1 infection other than bone marrow transplantation for ATL nor any measure to prevent HTLV-1 associated diseases in an infected individual. In this context, prevention of MTCT is expected to contribute disproportionately to reducing both the incidence of HTLV-1 and the burden of HTLV-1 associated diseases. In order to successfully avoid HTLV-1 MTCT, it is important to understand all the variables involved in this route of infection. Questions remain regarding frequency and risk factors for in utero peri-partum transmission whilst little is known about the efficacy of pre-labor cesarean section to reduce these infections. Understanding the contribution of peripartum infection to the burden of disease will be important to gauge the risk-benefit of interventions in this area. Few studies have examined the impact of HTLV-1 infection on fertility or pregnancy outcomes nor the susceptibility of the mother to infection during pregnancy and lactation. Whilst breast-feeding is strongly associated with transmission and avoidance of breast-feeding a proven intervention little is known about the mechanism of transmission from the breast milk to the infant and there have been no clinical trials of antiretroviral therapy (ARV) to prevent this route of transmission.

Project description:BackgroundLittle is known about the neurocognitive outcome in children exposed to perinatal mother-to-child Chikungunya virus (p-CHIKV) infection.MethodsThe CHIMERE ambispective cohort study compared the neurocognitive function of 33 p-CHIKV-infected children (all but one enrolled retrospectively) at around two years of age with 135 uninfected peers (all enrolled prospectively). Psychomotor development was assessed using the revised Brunet-Lezine scale, examiners blinded to infectious status. Development quotients (DQ) with subscores covering movement/posture, coordination, language, sociability skills were calculated. Predictors of global neurodevelopmental delay (GND, DQ ? 85), were investigated using multivariate Poisson regression modeling. Neuroradiologic follow-up using magnetic resonance imaging (MRI) scans was proposed for most of the children with severe forms.ResultsThe mean DQ score was 86.3 (95%CI: 81.0-91.5) in infected children compared to 100.2 (95%CI: 98.0-102.5) in uninfected peers (P<0.001). Fifty-one percent (n = 17) of infected children had a GND compared to 15% (n = 21) of uninfected children (P<0.001). Specific neurocognitive delays in p-CHIKV-infected children were as follows: coordination and language (57%), sociability (36%), movement/posture (27%). After adjustment for maternal social situation, small for gestational age, and head circumference, p-CHIKV infection was found associated with GND (incidence rate ratio: 2.79, 95%CI: 1.45-5.34). Further adjustments on gestational age or breastfeeding did not change the independent effect of CHIKV infection on neurocognitive outcome. The mean DQ of p-CHIKV-infected children was lower in severe encephalopathic children than in non-severe children (77.6 versus 91.2, P<0.001). Of the 12 cases of CHIKV neonatal encephalopathy, five developed a microcephaly (head circumference <-2 standard deviations) and four matched the definition of cerebral palsy. MRI scans showed severe restrictions of white matter areas, predominant in the frontal lobes in these children.ConclusionsThe neurocognitive outcome of children exposed to perinatal mother-to-child CHIKV infection is poor. Severe CHIKV neonatal encephalopathy is associated with an even poorer outcome.

Dataset Information

Cohort profile: the PHARMO Perinatal Research Network (PPRN) in the Netherlands: a population-based mother-child linked cohort.

Publications

Cohort profile: the PHARMO Perinatal Research Network (PPRN) in the Netherlands: a population-based mother-child linked cohort.

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