Routinely collected general practice data: goldmines for research? A report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands

Background Much of European primary care is computerised and many groups of practices pool data for research. Technology is making pooled general practice data widely available beyond the domain within which it is collected. Objective To explore the barriers and opportunities to exploiting routinely collected general practice data for research. Method Workshop, led by primary care and informatics academics experienced at working with clinical data from large databases, involving 23 delegates from eight countries. Email comments about the write-up from participants. Outputs The components of an effective process are: the input of those who have a detailed understanding of the context in which the data were recordedan assessment of the validity of these data and any denominator usedcreation of anonymised unique identifiers for each patient which can be decoded within the contributing practicesdata must be traceable back to the patient record from which it was extractedarchiving of the queries, the look-up tables of any coding systems used and the ethical constraints which govern the use of the data. Conclusions Explicit statements are needed to explain the source, context of recording, validity check and processing method of any routinely collected data used in research. Data lacking detailed methodological descriptors should not be published

Association of neuregulin 1 with schizophrenia confirmed in a Scottish population

To access publisher full text version of this article. Please click on the hyperlink in Additional Links fieldRecently, we identified neuregulin 1 (NRG1) as a susceptibility gene for schizophrenia in the Icelandic population, by a combined linkage and association approach. Here, we report the first study evaluating the relevance of NRG1 to schizophrenia in a population outside Iceland. Markers representing a core at-risk haplotype found in Icelanders at the 5' end of the NRG1 gene were genotyped in 609 unrelated Scottish patients and 618 unrelated Scottish control individuals. This haplotype consisted of five SNP markers and two microsatellites, which all appear to be in strong linkage disequilibrium. For the Scottish patients and control subjects, haplotype frequencies were estimated by maximum likelihood, using the expectation-maximization algorithm. The frequency of the seven-marker haplotype among the Scottish patients was significantly greater than that among the control subjects (10.2% vs. 5.9%, P=.00031). The estimated risk ratio was 1.8, which is in keeping with our report of unrelated Icelandic patients (2.1). Three of the seven markers in the haplotype gave single-point P values ranging from .000064 to .0021 for the allele contributing to the at-risk haplotype. This direct replication of haplotype association in a second population further implicates NRG1 as a factor that contributes to the etiology of schizophrenia

Neuregulin 1 and susceptibility to schizophrenia

To access full text version of this article. Please click on the hyperlink "View/Open" at the bottom of this pageThe cause of schizophrenia is unknown, but it has a significant genetic component. Pharmacologic studies, studies of gene expression in man, and studies of mouse mutants suggest involvement of glutamate and dopamine neurotransmitter systems. However, so far, strong association has not been found between schizophrenia and variants of the genes encoding components of these systems. Here, we report the results of a genomewide scan of schizophrenia families in Iceland; these results support previous work, done in five populations, showing that schizophrenia maps to chromosome 8p. Extensive fine-mapping of the 8p locus and haplotype-association analysis, supplemented by a transmission/disequilibrium test, identifies neuregulin 1 (NRG1) as a candidate gene for schizophrenia. NRG1 is expressed at central nervous system synapses and has a clear role in the expression and activation of neurotransmitter receptors, including glutamate receptors. Mutant mice heterozygous for either NRG1 or its receptor, ErbB4, show a behavioral phenotype that overlaps with mouse models for schizophrenia. Furthermore, NRG1 hypomorphs have fewer functional NMDA receptors than wild-type mice. We also demonstrate that the behavioral phenotypes of the NRG1 hypomorphs are partially reversible with clozapine, an atypical antipsychotic drug used to treat schizophrenia

Physical and cognitive impact following SARS-CoV-2 infection in a large population-based case-control study

© 2023. The Author(s).BACKGROUND: Persistent symptoms are common after SARS-CoV-2 infection but correlation with objective measures is unclear. METHODS: We invited all 3098 adults who tested SARS-CoV-2 positive in Iceland before October 2020 to the deCODE Health Study. We compared multiple symptoms and physical measures between 1706 Icelanders with confirmed prior infection (cases) who participated, and 619 contemporary and 13,779 historical controls. Cases participated in the study 5-18 months after infection. RESULTS: Here we report that 41 of 88 symptoms are associated with prior infection, most significantly disturbed smell and taste, memory disturbance, and dyspnea. Measured objectively, cases had poorer smell and taste results, less grip strength, and poorer memory recall. Differences in grip strength and memory recall were small. No other objective measure associated with prior infection including heart rate, blood pressure, postural orthostatic tachycardia, oxygen saturation, exercise tolerance, hearing, and traditional inflammatory, cardiac, liver, and kidney blood biomarkers. There was no evidence of more anxiety or depression among cases. We estimate the prevalence of long Covid to be 7% at a median of 8 months after infection. CONCLUSIONS: We confirm that diverse symptoms are common months after SARS-CoV-2 infection but find few differences between cases and controls in objective parameters measured. These discrepancies between symptoms and physical measures suggest a more complicated contribution to symptoms related to prior infection than is captured with conventional tests. Traditional clinical assessment is not expected to be particularly informative in relating symptoms to a past SARS-CoV-2 infection.Peer reviewe

Dimitri Rostoff as Dedalus (centre left), Roman Jasinsky as Icare (centre right), and artists of the company, in Icare, The Original Ballet Russe, Australian tour, His Majesty's Theatre, Melbourne, May 1940 (1) [picture] /

From: Icare : choreographic legend in one act / ballet and rhythms by Serge Lifar ; orchestrated by Antal Dorati.; Inscription: "4Y/20".; Part of the collection: Hugh P. Hall collection of photographs, 1938-1940.; Choreography by Serge Lifar ; scenery and costumes by Sidney Nolan.; Also available in an electronic version via the internet at: http://nla.gov.au/nla.pic-vn4173892. One of a collection of photographs taken by Hugh P. Hall of 28 ballet productions performed by the Covent Garden Russian Ballet (toured Australia 1938-1939) and the Original Ballet Russe (toured Australia 1939-1940). These are the second and third of the three Ballets Russes companies which toured Australasia between 1936 and 1940. The photographs were taken from the auditorium during a live performance in His Majesty's Theatre, Melbourne and mounted on cardboard for display purposes. For conservation and storage, the photographs have been demounted. The original arrangement of the photographs has been recorded, and details are available from the Pictures Branch of the National Library

"To cherish each day as it comes": a qualitative study of spirituality among persons receiving palliative care.

To access publisher's full text version of this article. Please click on the hyperlink in Additional Links field.Spirituality is one of the main aspects of palliative care. The concept is multidimensional and encompasses the existential realm as well as value-based and religious considerations. The aim of this study was to explore spirituality from the perspective of persons receiving palliative care and examine their experience of spirituality and its influence on their lives and well-being.Landspitali-University Hospital Research Fund , Science Fund of The Icelandic Chaplaincy Associatio

A multicenter study of attitudinal barriers to cancer pain management.

To access publisher's full text version of this article click on the hyperlink belowThe purpose of this study was to examine attitudinal barriers to cancer pain management and their relationship to pain, analgesic use, clinical, and demographic variables, as well as QOL, in a large sample of patients receiving strong opioids for pain in three European countries.Participants in the present study were 555 patients with cancer, 18 years and older recruited from six centers in Germany, Iceland, and Norway. All had received strong opioids for at least 72 h. Data was collected with the Barriers Questionnaire-II, the Brief Pain Inventory, and the European Organization for Research and Treatment of Cancer QLQ-C30.The mean (SD) age of patients was 61.68 (12.35) years and 53% were men. Most common diagnoses were gastrointestinal, lung, prostate, and breast cancer. The mean (SD) time from diagnosis was 32.24 (44.55) and 4.97 (9.64) months from start of opioid therapy. Mean (SD) pain severity was 3.19 (1.93) on a 0 to 10 scale, and 46.5% reported worst pain of 7 or higher. Attitudinal barriers had a mean (SD) of 1.95 (0.82) on a 0-5 scale, with fear of addiction as the strongest barrier across countries 2.85 (1.49). Barrier scores increased with age, and were higher among men than women. Higher barrier scores were associated with higher pain severity and interference, and lower performance status, but not with global health-QOL. Patients who had been on opioids for a shorter time reported higher barriers.Attitudinal barriers are frequent in cancer pain patients on opioids and are associated with less effective pain control.European Palliative Care Research Collaborative University of Iceland Research Fund Icelandic Nurses Association Research Fund Icelandic Cancer Society Research Fund Memorial fund of the Palliative Care at Landspitali-the National University Hospital of Iceland Scientific fund of the Oncology Department at Landspitali-the National University Hospital of Iceland Bergthora Magnusdottir and Jakob J Bjarnason Memorial Fund 6th EU program Landspitali-the National University Hospital of Iceland Research Fun

In the shadow of death: existential and spiritual concerns among persons receiving palliative care.

This study explores existential and spiritual concerns from the perspective of people receiving palliative care. It examines the meaning of these concerns, their influence on people's lives and investigates the connections between them. In-depth qualitative interviews were conducted with ten persons. Findings reveal existential and spiritual aspects as interconnected and an integral part of the participants' everyday existence. It concludes with a call for a better understanding of these phenomena in the palliative care context

In the shadow of death: existential and spiritual concerns among persons receiving palliative care.

This study explores existential and spiritual concerns from the perspective of people receiving palliative care. It examines the meaning of these concerns, their influence on people's lives and investigates the connections between them. In-depth qualitative interviews were conducted with ten persons. Findings reveal existential and spiritual aspects as interconnected and an integral part of the participants' everyday existence. It concludes with a call for a better understanding of these phenomena in the palliative care context

Association of Neuregulin 1 with Schizophrenia Confirmed in a Scottish Population

Recently, we identified neuregulin 1 (NRG1) as a susceptibility gene for schizophrenia in the Icelandic population, by a combined linkage and association approach. Here, we report the first study evaluating the relevance of NRG1 to schizophrenia in a population outside Iceland. Markers representing a core at-risk haplotype found in Icelanders at the 5′ end of the NRG1 gene were genotyped in 609 unrelated Scottish patients and 618 unrelated Scottish control individuals. This haplotype consisted of five SNP markers and two microsatellites, which all appear to be in strong linkage disequilibrium. For the Scottish patients and control subjects, haplotype frequencies were estimated by maximum likelihood, using the expectation-maximization algorithm. The frequency of the seven-marker haplotype among the Scottish patients was significantly greater than that among the control subjects (10.2% vs. 5.9%, P=.00031). The estimated risk ratio was 1.8, which is in keeping with our report of unrelated Icelandic patients (2.1). Three of the seven markers in the haplotype gave single-point P values ranging from .000064 to .0021 for the allele contributing to the at-risk haplotype. This direct replication of haplotype association in a second population further implicates NRG1 as a factor that contributes to the etiology of schizophrenia