In order to implement general data protection requirements and internationally recognised ethical requirements, research with personal health and social data demands a specific framework for the secure handling of confidential data. In the process of transferring data from the health service providers to the place where they are analysed, an important role is played by a so-called trust centre, responsible for pseudonymisation of personal and institutional identifiers. An undesirable concentration of data in the trust centre can be avoided by early separation of data in the data transfer institution: the trust centre receives only the identifier to be pseudonymised, while the health provision data are sent direct to the analysing institution, where they can be matched with the pseudonyms from the trust centre, with the help of a unique case number. The possibility of reidentification, which exists mainly in large (pseudonymised) data sets, can be reduced by use of an appropriate pseudonymisation process (e.g. insuree-based pseudonymisation by health service providers for sampling of insurees). The measures described here are suitable for protecting confidentiality and for further improving data security in the handling of confidential personal and institutional data.
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http://dx.doi.org/10.1055/s-2001-12105 | DOI Listing |
While telegenetic counseling has increased substantially since the start of the COVID-19 pandemic, previous studies reported concerns around building rapport, nonverbal communication, and the patient-counselor relationship. This qualitative evaluation elicited feedback from genetic counselors, referring clinicians, and patients from a single healthcare organization to understand the user-driven reasons for overall satisfaction and experience. We conducted 22 in-depth, semi-structured interviews with participants from all 3 groups between February 2022 and February 2023.
View Article and Find Full Text PDFCirc Genom Precis Med
January 2025
Garvan Institute of Medical Research, University of New South Wales, Sydney, Australia. (A.B., J.S., A.C., J.I.).
Background: Females with hypertrophic cardiomyopathy present at a more advanced stage of the disease and have a higher risk of heart failure and death. The factors behind these differences are unclear. We aimed to investigate sex-related differences in clinical and genetic factors affecting adverse outcomes in the Sarcomeric Human Cardiomyopathy Registry.
View Article and Find Full Text PDFJ Clin Orthop Trauma
February 2025
Trauma and Orthopaedics East and North Hertfordshire NHS Trust Lister Hospital, Stevenage, UK.
Background: There has been an increasing interest in elbow hemiarthroplasty to circumvent the problems with total elbow arthroplasty for comminuted distal humerus fractures in the elderly. The primary aim of the study is to assess the mid-term clinical and radiological outcomes of patients undergoing TEA and hemiarthroplasty for distal humerus fractures.
Methods: Retrospective analysis of data for patients undergoing hemiarthroplasty for distal humerus fractures (OTA- C3 Comminuted total articular fractures) was done.
Front Sports Act Living
January 2025
Centre for Clinical Exercise and Rehabilitation, School of Sport and Exercise, University of Derby, Derby, United Kingdom.
Front Clin Diabetes Healthc
January 2025
Department of Endocrinology and Diabetes, Birmingham Women's and Children's NHS Foundation Trust, Birmingham, United Kingdom.
Background: The UK National Paediatric Diabetes Audit (NPDA) data reports disparities in Haemoglobin A1c (HbA1c) levels among children and young people (CYP) with Type 1 Diabetes (T1D), with higher levels in those of Black ethnic background and lower socioeconomic status who have less access to technology. We investigate HbA1c differences in a T1D cohort with higher than national average technology uptake where > 60% come from an ethnic minority and/or socioeconomically deprived population.
Design & Methods: Retrospective cross-sectional study investigating the influence of demographic factors, technology use, and socioeconomic status (SES) on glycaemic outcomes.
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