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PubMed2003

Models of mental health nurse-general practitioner liaison: promoting continuity of care.

UNLABELLED: AIM AND RATIONALE: Community mental health nurses and general practitioners share a pivotal role in the provision of mental health care in the community. The focus of this study was to identify models of general practitioner collaboration used by these nurses, and analyse the implications of these models for promoting continuity of care. The study was derived from a larger study of how community mental health nurses promote wellness with clients who are experiencing an early episode of psychotic illness. METHODS: This qualitative study used interviews and observation to collect data. The study took place in 1999 in regional and rural New South Wales, Australia and involved community mental health nurses. FINDINGS: The findings show that two models of nurse and general practitioner (GP) collaboration emerged from the data: Shared Care and Specialist Liaison. In the Shared Care model, nurses maintain close contact with GPs throughout the episode of acute care. In the Specialist Liaison model, the community mental health team assumes overall responsibility for care and treatment throughout the acute episode of illness. Contact with GPs throughout the episode of care by the community mental health team is, at best, intermittent. CONCLUSION: The findings suggest that the Shared Care model is more consistent with supporting personal and organizational continuity of care, whereas the Specialist Liaison model is limited to encouraging personal continuity of care but further study is needed.

Community Mental Health Services↗

PubMed1999

The development of an international surgical registry: the ECSUR project. The European Cardiac Surgical Registry.

OBJECTIVES: Cardiac surgery is the first of any therapeutic discipline to attempt to establish a major international registry on a patient-by-patient basis. Being the first necessarily imposes a challenge since no rules or guidelines exist. Possibilities and boundaries must be identified. METHODS: The EACTS database committee established ECSUR (The European Cardiac SUrgical Registry) with the aim of collecting patient-by-patient information from centres across Europe. It was decided to collect patient data in three areas; adult cardiac surgery, paediatric cardiac surgery and thoracic surgery. Currently, these three areas are in different stages of development, with multinational data collection now having already commenced in adult cardiac surgery. RESULTS: After just over a year of data collection ECSUR has now received data from 98 centres in 30 countries, encompassing approximately 100,000 patients. Three national cardiac surgical registries currently send their data to ECSUR, and agreement has been reached with three other countries for prospective data sharing during 1999. CONCLUSION: This paper describes how ECSUR was established, the on-going status of the project, and how the project has now developed a global perspective through a joint European and US initiative to undertake international dataset unification for surgeons worldwide, by the definition of core adult cardiac, paediatric cardiac and thoracic surgical datasets.

Data Collection↗

PubMed1997

Assessing clinical outcomes: the community functioning of persons with serious mental illness.

OBJECTIVE: The demand to measure the clinical outcomes of persons with serious mental illness in the community is growing; however, there is no consensus about how to do this task. This paper identifies challenges in measuring the outcomes of persons with serious mental illness and reviews selected instruments that measure the community functioning of this population. METHODS: Papers in peer-reviewed psychiatric journals for the years 1986 to 1996 were reviewed to select instruments that measure two or more domains of community functioning and for which data on reliability and validity have been published. Selected instruments were evaluated, focusing on their format, content, item scoring, length, and original sample population. RESULTS AND CONCLUSIONS: Challenges to measuring the community functioning of persons with serious mental illness include the multiplicity of domains that must be measured, the conflicting interests of various stakeholders involved in care, the limitations of self-report data, and other methodological problems. Nine instruments that met the study criteria were selected from the literature. Three are self-report instruments, and six are based on the report of an informant or independent rater. The instruments vary in length and in their original sample population. The content areas most consistently represented are self-care and social relationships. Life satisfaction, health status, psychiatric symptoms, and work skills are not consistently addressed. Individual instruments have additional limitations, including the absence of behavioral anchors for scale items and the lack of specificity to persons with serious mental illness. Effort should be directed toward sharing data across settings, measuring the effects of treatment interventions, and demonstrating the predictive validity of outcome data.

Activities of Daily Living↗

PubMed2002

Genetic relatedness and female spatial organization in a solitary carnivore, the raccoon, Procyon lotor.

Among mammals, some of the most common types of cohesive social groupings originate from natal philopatry through the extended mother family. This retention of females within social groups (i.e. the nonrandom dispersion of female relatives in space) should affect population genetic structure. We examined the relationship between genetic relatedness and female spatial organization in a wild population of the North-American raccoon, Procyon lotor, a solitary carnivore in east Tennessee. Multilocus genetic band-sharing data and 3(1/2) years of radiotelemetry observations were used to study the spatial and genetic relationships among 38 adult females. DNA amplification employing primers of arbitrary sequence (random amplified polymorphic DNA; RAPD) indicated that female philopatry in raccoons led to a greater likelihood of neighbours being more related than expected by chance. Genetic distance based on RAPD band frequency was positively correlated with spatial distance among females (P = 0.0001) and genetic similarity was positively correlated with the extent of home-range overlap (P = 0.0028). Philopatry seemed biased towards females; average female-female similarities were greater than average male-male similarities (P = 0.0001), or average male-female similarities (P = 0.0001). High home-range overlap among some females with low or moderate levels of band sharing indicated that maternal inheritance of space was not a prerequisite for establishing or sharing home ranges. Female philopatry was the most probable explanation for the nonrandom spatial and genetic association of raccoons in east Tennessee.

Animals↗

PubMed2002

MR image reconstruction algorithms for sparse k-space data: a Java-based integration.

We have worked on multi-dimensional magnetic resonance imaging (MRI) data acquisition and related image reconstruction methods that aim at reducing the MRI scan time. To achieve this scan-time reduction we have combined the approach of 'increasing the speed' of k-space acquisition with that of 'deliberately omitting' acquisition of k-space trajectories (sparse sampling). Today we have a whole range of (sparse) sampling distributions and related reconstruction methods. In the context of a European Union Training and Mobility of Researchers project we have decided to integrate all methods into one coordinating software system. This system meets the requirements that it is highly structured in an object-oriented manner using the Unified Modeling Language and the Java programming environment, that it uses the client-server approach, that it allows multi-client communication sessions with facilities for sharing data and that it is a true distributed computing system with guaranteed reliability using core activities of the Java Jini package.

Algorithms↗

PubMed1999

Supplemental calcium for the prevention of hip fracture: potential health-economic benefits.

We assessed the cost-effectiveness of daily calcium supplementation for the prevention of primary osteoporotic hip fractures. The assessment was based on our meta-analysis of the published relative-risk estimates from 3 double-masked, placebo-controlled, clinical trials and our analysis of raw data from the National Health and Nutrition Examination Survey 1988-1994 on the daily intake of calcium supplements by adults in the United States. These data were then used to estimate the preventable proportion of hip fractures. The 1995 National Hospital Discharge Survey database provided the number and demographic characteristics of patients discharged with a primary diagnosis of hip fracture, as well as their discharge destination. The 1990 itemized costs of hip fractures, as estimated by the US Congress Office of Technology Assessment, were inflated to 1995 dollars using the medical care component of the Consumer Price Index. Using these inflated itemized costs, we then estimated the weighted average expenditures, reflecting both the types of services associated with specific hospital-discharge destinations and the demographic characteristics of discharged patients. The cost of supplements containing 1200 mg/d of elemental calcium for the mean duration (34 months) of the 3 clinical trials was calculated on the basis of 1998 unit-price and market-share data for 6 representative products. For 1995, the data indicate that 290,327 patients aged > or =50 years were discharged from US hospitals with a primary diagnosis of hip fracture, at our estimated direct cost of $5.6 billion. Based on the risk reductions seen in the 3 trials, we estimated that 134,764 hip fractures and $2.6 billion in direct medical costs could have been avoided if individuals aged > or =50 years consumed approximately 1200 mg/d of supplemental calcium. Additional savings could be expected, because this intervention is also associated with significant reductions in the risk for all nonvertebral fractures. Comparing the cost of calcium with the expected medical savings from hip fractures avoided, it is cost-effective to give 34 months of calcium supplementation to women aged > or =75 years in the United States. If, as the published studies suggest, shorter periods of supplementation result in an equivalent reduction in the risk of hip fractures, calcium supplementation becomes cost-effective for all adults aged > or =65 years in the United States. The data support encouraging older adults to increase their intake of dietary calcium and to consider taking a daily calcium supplement. Even small increases in the usage rate of supplementation are predicted to yield significant savings and to reduce the morbidity and mortality associated with hip fracture at an advanced age.

Aged↗

PubMed2003

Effects of patents and licenses on the provision of clinical genetic testing services.

The growth of patents that include genetic sequences has been accompanied by concern about their impact on the ability of physicians to provide clinical genetic testing services and to perform research. Therefore, we conducted a survey of clinical laboratory directors that perform DNA-based genetic tests to examine potential effects. We performed a telephone survey between July and September in 2001 of all laboratory directors in the United States who were members of the Association for Molecular Pathology or who were listed on the GENETESTS:org website. One hundred thirty-two of 211 (63%) laboratory directors were interviewed. Ten of these were excluded because they did not conduct DNA-based genetic tests. Almost all performed genetic tests for clinical purposes. Half performed tests for research purposes as well. Twenty-five percent of respondents reported that they had stopped performing a clinical genetic test because of a patent or license. Fifty-three percent of respondents reported deciding not to develop a new clinical genetic test because of a patent or license. In total, respondents were prevented from performing 12 genetic tests, and all of these tests were among those performed by a large number of laboratories. We found 22 patents that were relevant to the performance of these 12 tests. Fifteen of the 22 patents (68%) are held by universities or research institutes, and 13 of the 22 patents (59%) were based on research funded by the United States Government. Overall, respondents reported that their perceptions of the effects of patents on the cost, access, and development of genetic tests, or data sharing among researchers, were negative. In contrast, most respondents felt that patents did not have an effect on the quality of testing. We conclude that patents and licenses have had a significant effect on the ability of clinical laboratories to develop and provide genetic tests. Furthermore, our findings suggest that clinical geneticists feel that their research is inhibited by patents. The effects of patents and licenses on patients' access to tests, and the costs and quality thereof, remains to be determined.

Data Collection↗

PubMed2004

Gene ontology application to genomic functional annotation, statistical analysis and knowledge mining.

While a massive amount of biomolecular information is increasingly accumulating in different databanks, on the other hand high-throughput technologies are generating a great quantity of data that need to be annotated with the genomic information available, and interpreted. To this aim, the use of specific ontologies can greatly help either in integrating different information stored within heterogeneous databanks, or in identifying and clustering sequence data sharing common characteristics. In the molecular biology domain, the Gene Ontology (GO) is the most developed and widely used ontology. To demonstrate its great utility in the annotation and biological interpretation of gene sets obtained by means of high-throughput experiments, we implemented the web application here described. It enables functional annotations of a given gene set on a genomic scale and across different species. Within our application the annotations provided by the GO vocabulary allow either to easily bind several information from different resources, or to cluster annotated genes according to their biological characteristics. Through the GO structure it is also possible to represent biological concepts with different specificity levels, from very general to very precise concepts. Furthermore, the statistical evaluation of the categorizations provided by the GO annotations enables to highlight the most significant biological characteristics of a gene set, and therefore to mine knowledge from data. Our created tool meets the need to manage a vast quantity of biological data with a simple user interface adapt also for users with limited informatics knowledge, leading them to evaluate the functional significance of experiment's results with graphical views and statistical indexes in a well-known web browser user interface.

Genomics↗

PubMed2000

Unemployment, drug use, and HIV risk among American Indian and Alaska Native drug users.

American Indians and Alaska Natives have had low employment in recent history. Drug users also have low employment due to cycles of drug use and relapse,and the impact of the type of drug abused on levels of functioning. Drug use is associated with increased HIV risk through injection drug use, frequency of injection, and needle sharing. Data from three sites of the NIDA Cooperative Agreement for Community Based-Outreach/Intervention Research were analyzed to determine the relationship among race/ethnicity, age, and level of educational attainment on employment and unemployment at intake interview and six-month follow-up. HIV risk for those employed and unemployed was then assessed. American Indian and Alaska Native drug users were younger, less educated, and less likely to have a paid job at both intake and follow-up than non-Native drug users. Those participants who were unemployed at baseline interview who were American Indian/Alaska Native were less likely to transition to employment at six-month follow-up than other race/ethnicity groups in the cohort. However, all participants showed low levels of employment at follow-up. Individuals who were employed at baseline and those who transitioned to employment had lower levels of injection drug use and needle sharing than those who were unemployed at both baseline and follow-up. American Indian and Alaska Native drug users may be at risk for acquisition of HIV due to drug risk behaviors that appear to be associated with unemployment.

Adult↗

PubMed2004

Conference summary: computers in respiratory care.

Computers and data management in respiratory care reflect the larger practices of hospital information systems: the diversity of conference topics provides evidence. Respiratory care computing has shown a steady, slow progression from writing programs that calculate shunt equations to departmental management systems. Wider acceptance and utilization have been stifled by costs, both initial and on-going. Several authors pointed out the savings that were realized from information systems exceeded the costs of implementation and maintenance. The most significant finding from one of the presentations was that no other structure or skilled personnel could provide respiratory care more efficiently or cost-effectively than respiratory therapists. Online information resources have increased, in forms ranging from peer-reviewed journals to corporate-sponsored advertising posing as authoritative treatment regimens. Practitioners and patients need to know how to use these resources as well as how to judge the value of information they present. Departments are using computers for training on a schedule that is more convenient for the staff, providing information in a timely manner and potentially in more useful formats. Portable devices, such as personal digital assistants (PDAs) have improved the ability not only to share data to dispersed locations, but also to collect data at the point of care, thus greatly improving data capture. Ventilators are changing from simple automated bellows to complex systems collecting numerous respiratory parameters and offering feedback to improve ventilation. Clinical databases routinely collect information from a wide variety of resources and can be used for analysis to improve patient outcomes. What could possibly go wrong?

Computer Systems↗

PubMed2002

Regional bias in birth defect prevalence rates for Arkansas: influence of incomplete ascertainment along surveillance system borders.

BACKGROUND: As part of the continuing evaluation of the Arkansas Reproductive Health Monitoring System (ARHMS), we assessed the effects on birth defect prevalence rates introduced by incomplete case ascertainment along surveillance boundaries. METHODS: Using data from ARHMS and Arkansas Vital Statistics for 1993-1998, we determined birth defect prevalence rates (per 10,000 live births), stratified by race, among three geographic comparison groups of counties. These included: (1) the Northeast Group, near the state border at Memphis, Tennessee; (2) the Central Group, surrounding Little Rock, Arkansas; and (3) the Southwest Group, near Texarkana, Texas. These counties have similar socioeconomic measures and proximity to health care facilities, but are differentiated by limitations imposed by ARHMS' surveillance borders. Maternal age-standardized rates from the control groups were used to impute expected rates, for the Northeast Group and statewide, which were compared with reported rates. RESULTS: We found that there were 620 fewer reported birth defect cases than expected for the Northeast Group. The Northeast Group's prevalence rates were approximately half of the control groups' rates (310.6 vs. 529.8, respectively, for Whites, and 240.8 vs. 550.1, respectively, for African-Americans). Incorporating the missed cases into statewide prevalence calculations could increase prevalence rates from 502.6 to 523.2 for Whites and from 527.4 to 590.7 for African-Americans. CONCLUSIONS: This study identified significant regional differences in reported birth defect rates in Arkansas. Case ascertainment might be incomplete in other surveillance systems lacking the means to share data with neighboring systems. Regional inaccuracy can hinder evaluation of localized birth defect trends or targeted prevention efforts.

Black or African American↗

PubMed2005

Use of the dog as non-rodent test species in the safety testing schedule associated with the registration of crop and plant protection products (pesticides): present status.

The results from a survey of the expert information that is publicly accessible on the use of the dog as test species during the regulatory evaluation of agricultural chemicals and pesticides are reported. Methods that are being used or considered in order to reduce the number of dogs used for this purpose are described. Regulatory evaluation aims at establishing threshold values for safe human exposure; it is based on no-observed-adverse-effect levels (NOELs) determined in animal studies. Current regulations require testing in two species, a rodent species (usually rat or mouse), and a non-rodent species (usually the dog). Subchronic (90-day) and chronic (12-month) repeated-dose feeding studies must be routinely conducted in dogs. This report first focuses on the results from a retrospective study analysing data on 216 pesticides kept on record by the Bundesinstitut für Risikobewertung, BfR (German Federal Institute for Risk Assessment), the competent regulatory authority in Germany. The study was sponsored and coordinated by SET, the German Foundation for the Promotion of Research on Replacement and Complementary Methods to Reduce Animal Testing (Stiftung zur Förderung der Erforschung von Ersatz-und Ergänzungsmethoden zur Einschränkung von Tierversuchen, Mainz) and conducted by the BfR. Since the data submitted for registration of a product is the property of the manufacturer, the study could only proceed with the collaboration of the German Association of Manufacturers of Agricultural Chemicals (Industrieverband Agrar, IVA). To ensure confidentiality, designated codes were used instead of the compounds' proper names when the study was published. The results support two major conclusions. The use of the dog for the testing of pesticides is indeed necessary because the dog has proved to be the most sensitive species for about 15% of the compounds examined. However, chronic studies are only of limited value since they only provide essential information that cannot be obtained in sub-chronic studies in about 5% of cases. These conclusions are supported by several retrospective analyses using data on pharmaceutical drugs carried out in the context of the International Conference on Harmonisation of Technical Requirements for the Registration of Pharmaceuticals for Human Use (ICH). Over 90% of drugs elicited no toxic symptoms in 12-month studies in dogs in addition to those that had been recorded previously in studies conducted for 90 or 180 days in dogs and rats. Another approach comparing the results from pre-clinical animal studies with clinical studies noted that animal studies predicted about 70% of the effects observed in volunteers, and in about 94% of cases the effects occurred in animal studies lasting not more than one month. Furthermore, the report summarises the current methods under consideration that could refine or reduce the use of dogs in toxicity testing: industrial data sharing and harmonisation of guidelines, in vitro methods, human studies, computational prediction models, and integrated testing approaches. The integrated Agricultural Chemicals Safety Assessment (ACSA) testing scheme, which is currently being developed in an international project initiated by the International Life Sciences Institute (ILSI, USA), is of particular relevance, since an ambitious attempt is being made to design a new comprehensive test framework incorporating modern scientific approaches and covering most aspects of current regulatory testing requirements. The ACSA project has access to the pesticide database of the US EPA's Office of Pesticide Programs (OPP). Preliminary results have confirmed the two major conclusions from the joint SET/BfR study conducted in Germany. Taking these results into account, it is recommended that the regulatory requirement for 12-month studies to be routinely carried out in dogs should be abandoned. While 90-day studies should be conducted in both rats and dogs, chronic studies should only take place in rats. If the dog is more sensitive than the rat in the 90-day study, an additional safety factor to the NOEL value obtained in the chronic rat study should be applied in order to set the threshold for safe human exposure, instead of conducting a 12-month study in dogs. This safety factor may be calculated from chronic NOEL data available in several pesticide databases. Chronic tests using dogs would then only be required if the test compound belongs to a new class of chemicals that has never been tested before. Thus, the report concludes that, according to current scientific knowledge, the routine 12-month studies in dogs are no longer required for agricultural chemicals and pesticides, and international regulations should be changed accordingly. Active international support of such measures is welcomed, from both an economical and an animal welfare perspective.

Animal Testing Alternatives↗

PubMed2006

DADOS-Survey: an open-source application for CHERRIES-compliant Web surveys.

BACKGROUND: The Internet has been increasingly utilized in biomedical research. From online searching for literature to data sharing, the Internet has emerged as a primary means of research for many physicians and scientists. As a result, Web-based surveys have been employed as an alternative to traditional, paper-based surveys. We describe DADOS-Survey, an open-source Web-survey application developed at our institution that, to the best of our knowledge, is the first to be compliant with the Checklist for Reporting Results of Internet E-Surveys (CHERRIES). DADOS-Survey was designed with usability as a priority, allowing investigators to design and execute their own studies with minimal technical difficulties in doing so. RESULTS: To date, DADOS-Survey has been successfully implemented in five Institutional Review Board-approved studies conducted by various departments within our academic center. Each of these studies employed a Web-survey design as their primary methodology. Our initial experience indicates that DADOS-Survey has been used with relative ease by each of the investigators and survey recipients. This has been further demonstrated through formal and field usability testing, during which time suggestions for improvement were incorporated into the software design. CONCLUSION: DADOS-Survey has the potential to have an important role in the future direction of Web-survey administration in biomedical research. This CHERRIES-compliant application is tailored to the emerging requirements of quality data collection in medicine.

Academic Medical Centers↗

PubMed2005

Is bloodstream infection preventable among premature infants? A tale of two cities.

BACKGROUND: Bloodstream infection (BSI) is a significant cause of morbidity and death encountered in the NICU. The rates of BSIs vary significantly in NICUs across the nation. However, no attempt has been made to correlate this variation with specific infection-control practices and policies. We experienced a significant increase in BSIs in the NICU at the George Washington University Hospital and were seeking additional precautionary measures to reduce BSI rates. Our objective was to review policies and practices associated with lower infection rates nationally and to test their reproducibility in our unit. DESIGN AND METHODS: Data on BSI rates in 16 NICUs were reviewed. The BSI rate at Connecticut Children's Medical Center (CCMC) was the lowest among those reviewed. A team from George Washington University Hospital conducted a site visit to CCMC to examine their practices. Differences in the aseptic precautions used for intravenous line management were noted at CCMC, where a closed medication system is used. This system was applied at George Washington University Hospital starting January 1, 2001. Infection rates among low birth weight infants (<2500 g) at George Washington University Hospital in the period from January 1998 to December 2000 (group 1) were compared with those in the period from January 2001 to December 2003 (group 2). Comparisons between the 2 cohorts were made with Fisher's exact test, the Kruskal-Wallis test, and Student's t test. Multivariate analysis was used to control for differences in birth weight, gestational age, central line days, and ventilator days. Analyses were repeated for the subgroup of very low birth weight infants (<1500 g). RESULTS: A total of 536 inborn low birth weight infants were included in this retrospective study (group 1, N = 169 infants; group 2, N = 367). The incidence of sepsis decreased significantly from group 1 to group 2 (25.4% and 2.2%, respectively). The reduction of sepsis observed in association with the new practice was statistically significant after controlling for birth weight, central line days, and ventilator days in a multiple regression model (regression coefficient: 0.95 +/- 0.29). The odds ratio of reduction in sepsis after implementation of the new practice was 2.6 (95% confidence interval: 1.5-4.5). The central line-related BSI rate decreased from 15.17 infections per 1000 line days to 2.1 infections per 1000 line days. The study included 233 very low birth weight infants, ie, 90 in group 1 and 143 in group 2. The rate of BSIs decreased significantly from group 1 to group 2 (46.7% and 5.6%, respectively). The decrease in sepsis rate remained significant in a multiple regression model (regression coefficient: 1.42 +/- 0.35). The odds ratio of decreased sepsis in relation to the new policy application among the very low birth weight infants was 4.15 (95% confidence interval: 2.1-8.3). CONCLUSION: Applying the closed medication system was associated with reduced BSI rates in our unit. This protocol was easily reproducible in our environment and showed immediate results. Serious attempts to share data can potentially optimize outcomes and standardize policies and practices among NICUs.

Asepsis↗

PubMedDate not supplied

Scope and impact of financial conflicts of interest in biomedical research: a systematic review.

CONTEXT: Despite increasing awareness about the potential impact of financial conflicts of interest on biomedical research, no comprehensive synthesis of the body of evidence relating to financial conflicts of interest has been performed. OBJECTIVE: To review original, quantitative studies on the extent, impact, and management of financial conflicts of interest in biomedical research. DATA SOURCES: Studies were identified by searching MEDLINE (January 1980-October 2002), the Web of Science citation database, references of articles, letters, commentaries, editorials, and books and by contacting experts. STUDY SELECTION: All English-language studies containing original, quantitative data on financial relationships among industry, scientific investigators, and academic institutions were included. A total of 1664 citations were screened, 144 potentially eligible full articles were retrieved, and 37 studies met our inclusion criteria. DATA EXTRACTION: One investigator (J.E.B.) extracted data from each of the 37 studies. The main outcomes were the prevalence of specific types of industry relationships, the relation between industry sponsorship and study outcome or investigator behavior, and the process for disclosure, review, and management of financial conflicts of interest. DATA SYNTHESIS: Approximately one fourth of investigators have industry affiliations, and roughly two thirds of academic institutions hold equity in start-ups that sponsor research performed at the same institutions. Eight articles, which together evaluated 1140 original studies, assessed the relation between industry sponsorship and outcome in original research. Aggregating the results of these articles showed a statistically significant association between industry sponsorship and pro-industry conclusions (pooled Mantel-Haenszel odds ratio, 3.60; 95% confidence interval, 2.63-4.91). Industry sponsorship was also associated with restrictions on publication and data sharing. The approach to managing financial conflicts varied substantially across academic institutions and peer-reviewed journals. CONCLUSIONS: Financial relationships among industry, scientific investigators, and academic institutions are widespread. Conflicts of interest arising from these ties can influence biomedical research in important ways.

Academies and Institutes↗

PubMed2026

Genetic testing practices across European epilepsy centers: An ERN EpiCARE survey.

OBJECTIVE: Genetic testing plays an increasing role in the diagnostic pathway for rare and complex epilepsies. However, significant heterogeneity persists in access, implementation, and interpretation across Europe. This study aimed to assess genetic testing practices, accessibility, and challenges across expert epilepsy centers within the European Reference Network for Rare and Complex Epilepsies (ERN EpiCARE) and to identify key challenges and areas for harmonization. METHODS: A cross-sectional survey was developed by the ERN EpiCARE Clinical Genetics Working Group and distributed to 50 EpiCARE member centers across 27 European countries. The questionnaire collected quantitative and qualitative information on available genetic testing modalities, turnaround times, use of rapid testing, multidisciplinary team (MDT) organization, genetic counseling practices, and perceived challenges. Survey findings were complemented by a structured discussion held during the ERN EpiCARE General Assembly. RESULTS: Responses were received from 46 centers (51 responses). Most centers reported access to genetic testing, predominantly through in-house facilities. Whole-exome sequencing was available in 85% of centers, and gene panels were available in 78%. Whole-genome sequencing was available in 59% of centers, frequently restricted to research or performed externally. Turnaround times for standard genetic testing were most commonly between 1 and 6 months. Genetic testing strategies varied by epilepsy subtype, with gene panels most frequently used as first-tier testing, and exome sequencing preferentially applied in developmental and epileptic encephalopathies. Considerable heterogeneity was observed in MDT organization, access to genetic counseling, reimbursement, data-sharing and registry infrastructures. SIGNIFICANCE: Although genetic testing is widely available across ERN EpiCARE centers, substantial disparities persist in its organization, accessibility, and implementation. Addressing these gaps through strengthened multidisciplinary collaboration, harmonized diagnostic strategies, and enhanced European-level coordination will be essential to ensure equitable access to high-quality genetic care for individuals with epilepsy. PLAIN LANGUAGE SUMMARY: Genetic testing is increasingly integrated in the diagnostic pathway for rare and complex epilepsies and treatment decisions. An ERN EpiCARE survey assessed how genetic testing is implemented across specialist epilepsy centers in Europe and identified persistent organizational, financial, and clinical barriers. Although most centers had access to advanced genomic testing, important differences were identified in access, reimbursement, turnaround times, and multidisciplinary expertise. European collaboration and harmonized practices are needed to support equitable access to high-quality genetic care for people living with epilepsy.

European reference networks↗

PubMed2007

Italian Rett database and biobank.

Rett syndrome is the second most common cause of severe mental retardation in females, with an incidence of approximately 1 out of 10,000 live female births. In addition to the classic form, a number of Rett variants have been described. MECP2 gene mutations are responsible for about 90% of classic cases and for a lower percentage of variant cases. Recently, CDKL5 mutations have been identified in the early onset seizures variant and other atypical Rett patients. While the high percentage of MECP2 mutations in classic patients supports the hypothesis of a single disease gene, the low frequency of mutated variant cases suggests genetic heterogeneity. Since 1998, we have performed clinical evaluation and molecular analysis of a large number of Italian Rett patients. The Italian Rett Syndrome (RTT) database has been developed to share data and samples of our RTT collection with the scientific community (http://www.biobank.unisi.it). This is the first RTT database that has been connected with a biobank. It allows the user to immediately visualize the list of available RTT samples and, using the "Search by" tool, to rapidly select those with specific clinical and molecular features. By contacting bank curators, users can request the samples of interest for their studies. This database encourages collaboration projects with clinicians and researchers from around the world and provides important resources that will help to better define the pathogenic mechanisms underlying Rett syndrome.

Databases as Topic↗

PubMedDate not supplied

CPAP devices: encouraging patients with sleep apnea.

Continuous positive airway pressure devices (CPAP) used at night prevent apnea, hypoxia, and sleep disturbance. Although CPAP is more effective than placebo in improving sleepiness and quality of life measures in people with obstructive sleep apnea, patients often prefer a less-effective oral appliance. This article examines help-seeking experiences in support groups of individuals with sleep apnea who use CPAP devices. To understand patients' experiences and difficulties using CPAP, an urban medical center and a rural hospital shared data collected from 17 individuals with sleep apnea who use CPAP for treatment and attend a support group. Four related themes emerged including (a) becoming motivated to persist with help from the group, (b) accommodating to the device, (c) listening and telling stories to gain practical knowledge, and (d) implementing a support group as a caring community. Healthcare providers could recommend support groups on CPAP use while nurses guide discussion, provide technical information, and promote empowerment.

Adaptation, Psychological↗