The German Biobank Node (GBN) is the central hub for German biobank activities and coordinates the German Biobank Alliance (GBA) to which 11 biobank sites in Germany belong. GBN, in cooperation with designated members of GBA, has developed various services and products for the German biobank community. To ensure that services and products are well aligned with the needs and interests of relevant stakeholders, GBN actively engages with its diverse stakeholder groups through different methods. Important stakeholder groups are the members of GBA who are generally the first users of developed products and services. Members of GBA were surveyed anonymously through a web-based application. The survey was sent to all members registered with an internal communication platform. Participants were primarily asked about their experiences with GBN, developed products and services, their wishes for the future of GBN/GBA, and their attitudes toward intensified cooperation on the European level. Answers were analyzed using descriptive statistics and qualitative content analysis. Overall 63 of 110 registered GBA members (response rate of 57%) finished the survey. Participants were overall satisfied with the work of GBN and developed products and services. They also pointed out room for improvement. Participants, for example, proposed to shorten the survey developed for biobanks to engage with their users. They also shared what additional support wishes they had, for example, uniform cost models or use and access policies for the GBA community. The survey was helpful to get a good overview of the experiences and attitudes of GBA members before making services and products available to other actors in the German biobank community. GBN will use the feedback to improve its work and to guide future strategy development. Survey research has shown an adequate method to engage with this particular stakeholder group, but further research on choosing methods for stakeholder engagement might be helpful.
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http://dx.doi.org/10.1089/bio.2019.0060 | DOI Listing |
Breast Cancer Res
December 2024
Biostatistics Unit, The Cyprus Institute of Neurology and Genetics, 6 Iroon Avenue, 2371 Ayios Dometios, Nicosia, Cyprus.
Background: The 313-variant polygenic risk score (PRS) provides a promising tool for clinical breast cancer risk prediction. However, evaluation of the PRS across different European populations which could influence risk estimation has not been performed.
Methods: We explored the distribution of PRS across European populations using genotype data from 94,072 females without breast cancer diagnosis, of European-ancestry from 21 countries participating in the Breast Cancer Association Consortium (BCAC) and 223,316 females without breast cancer diagnosis from the UK Biobank.
EClinicalMedicine
January 2025
Division of Clinical Epidemiology and Aging Research, German Cancer Research Center, Im Neuenheimer Feld 581, Heidelberg, 69120, Germany.
Background: We aimed to evaluate the incremental predictive value of metabolomic biomarkers for assessing the 10-year risk of type 2 diabetes when added to the clinical Cambridge Diabetes Risk Score (CDRS).
Methods: We utilized 86,232 UK Biobank (UKB) participants (recruited between 13 March 2006 and 1 October 2010) for model derivation and internal validation. Additionally, we included 4383 participants from the German ESTHER cohort (recruited between 1 July 2000 and 30 June 2002 for external validation).
PLoS Pathog
December 2024
Institute of Human Genetics, School of Medicine, University Bonn & University Hospital Bonn, Bonn, Germany.
Courses of SARS-CoV-2 infections are highly variable, ranging from asymptomatic to lethal COVID-19. Though research has shown that host genetic factors contribute to this variability, cohort-based joint analyses of variants from the entire allelic spectrum in individuals with confirmed SARS-CoV-2 infections are still lacking. Here, we present the results of whole genome sequencing in 1,220 mainly vaccine-naïve individuals with confirmed SARS-CoV-2 infection, including 827 hospitalized COVID-19 cases.
View Article and Find Full Text PDFEBioMedicine
December 2024
Population Health Sciences, German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany; Department of Neurology, Faculty of Medicine, University of Bonn, Germany. Electronic address:
Background: Emerging findings indicate that the hypothalamus, the body's principal homeostatic centre, plays a crucial role in modulating cognition, but comprehensive population-based studies are lacking.
Methods: We used cross-sectional data from the Rhineland Study (N = 5812, 55.2 ± 13.
Lancet Neurol
January 2025
Spinal Cord Injury Center, Balgrist University Hospital, University of Zurich, Zurich, Switzerland.
Background: Spinal cord injury results in permanent neurological impairment and disability due to the absence of spontaneous regeneration. NG101, a recombinant human antibody, neutralises the neurite growth-inhibiting protein Nogo-A, promoting neural repair and motor recovery in animal models of spinal cord injury. We aimed to evaluate the efficacy of intrathecal NG101 on recovery in patients with acute cervical traumatic spinal cord injury.
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