NHLBI-CMREF Workshop Report on Pulmonary Vascular Disease Classification: JACC State-of-the-Art Review

WM Oldham, AR Hemnes, MA Aldred, J Barnard… - Journal of the American …, 2021 - jacc.org
… by evidence-based medicine within a single patient journey. … methods, a national effort to
coordinate biosamples and data, a … This report summarizes the working group’s major findings (…

Public and Patients' Perspectives Towards Data and Sample Sharing for Research: An Overview of Empirical Findings

MC Sánchez, JC Hernández Clemente… - … Human Research …, 2023 - journals.sagepub.com
… the sharing of data and biospecimens for research and to identify … Studies concerning
biobank data, biological samples, … the quality rating, the number of participants and type of study

Health data sharing attitudes towards primary and secondary use of data: a systematic review

F Cascini, A Pantovic, YA Al-Ajlouni, V Puleo… - …, 2024 - thelancet.com
… rates were observed in the case of studies that explored sharing biobank data (98% and 10%,
… the importance of databases in health research, quality assurance and risk management, …

The Porto European cancer research summit 2021

U Ringborg, A Berns, JE Celis, M Heitor, J Tabernero… - 2021 - Wiley Online Library
… and emphasized the need for evidence-based knowledge and its … quality assurance by
design with multidimensional data sets, a multidisciplinary tumour board, integral QC biobanking/…

Adopting Mechanistic Molecular Biology Approaches in Exposome Research for Causal Understanding

AL Foreman, B Warth, EVS Hessel… - Environmental …, 2024 - ACS Publications
… via the EIRENE analytical QA/QC working group. There is … There is a need to build on work
in coordinated biobanks (eg … to human health, thus providing an evidence-based comparison …

German Society for Clinical Chemistry and Laboratory Medicine–areas of expertise: Division reports from the German Congress of Laboratory Medicine 2022 in …

M Nauck, S Holdenrieder, HG Klein… - Journal of Laboratory …, 2024 - degruyter.com
… for high-quality analysis. These include speed of … The EFLM working group (WG-PRE) has
therefore set itself the goal of … the network of German biobanks (German Biobank Alliance, …

Identifying best practices for obtaining ethical consent and for data and sample collection in pediatric rheumatic diseases–the role of the EU-wide ethics process in …

AJC Eikelberg - 2020 - ub01.uni-tuebingen.de
… large numbers of biospecimen and corresponding data. … the collection and storage of data
and samples in biobanks and … in several meetings of the work group and a meeting with an …

[PDF][PDF] Nationwide and international registries on scleroderma. Past, present, and future

M Rubio-Rivas - scholar.archive.org
working group of key centers that have a clinical and … dations in management, research, and
biobanking strategies in SSc26-… An evidence-based strategy to screen for pulmonary arterial …

[HTML][HTML] A Likelihood Ratio Approach for Utilizing Case-Control Data in the Clinical Classification of Rare Sequence Variants: Application to BRCA1 and BRCA2

…, K Michailidou, GC-HBOC study Collaborators… - Human mutation, 2023 - hindawi.com
… As an initiative from the ENIGMA Analytical Working Group, … preparation was conducted
by the Survey and Biospecimen … The Danish Cancer Biobank is acknowledged for providing …

[PDF][PDF] GA4GH: International policies and standards for data sharing across genomic research and healthcare

HL Rehm, AJH Page, L Smith, JB Adams, G Alterovitz… - Cell genomics, 2021 - cell.com
… genomics working group, which supports the reporting of … laboratory knowledge and
evidence-based variant classification. … sites such as biobanks in the UK (UK BioBank, Generation …