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Linking records could serve as a useful tool for scientific research and as a facilitator for local policymaking. This article examines the challenges and opportunities for researchers to lawfully link routinely collected health and education data with cohort data of children when using it as a tool for scientific research in Portugal. Such linking can be lawfully conducted in Portugal if three requirements are met. First, data processing pursues a legitimate purpose, such as scientific research. Secondly, data linking complies with the legal obligations of research entities and researchers, acting as data controllers or processors, and it respects the rights of children as data subjects. Finally, data linking is based on the explicit written consent of those with parental responsibility for the child. So far, the implementation of the General Data Protection Regulation in Portugal has not facilitated record linkage. It is argued that further harmonised implementation of that Regulation across European Union and European Economic Area Member States, establishing a minimum shared denominator for record linkage in scientific research for the common good, including without explicit consent, is needed.
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http://dx.doi.org/10.1093/medlaw/fwac040 | DOI Listing |
J Public Health (Berl)
July 2025
Department of Epidemiology, George Washington University (GWU), Washington, DC, USA.
Aim: Patient reported outcomes (PROs) can help to evaluate gaps and areas for improvement along the HIV care continuum. We sought to describe the methodology and processes of a PROs study within the DC Cohort study population, describe the PROs results to date, report on lessons learned, and describe future directions of the research.
Subject And Methods: Each study site recruited participants from the DC Cohort, a longitudinal study on people with HIV, to complete the electronic PROs baseline and annual follow-up surveys, which consisted of previously validated measures of social determinants of health, mental health, substance use, medication adherence, and other related measures.
Aust J Rural Health
October 2025
Department of Rural Health, University of Newcastle, Tamworth, New South Wales, Australia.
Aims: Workforce maldistribution is a challenge to the equitable provision of healthcare in Australia. This Commentary details how a multi-university, large-scale, and growing data asset is positioned to contribute strategically and operationally to addressing national workforce priorities.
Context: The Nursing and Allied Health Graduate Outcome Tracking (NAHGOT) study is a prospective longitudinal research project with a commitment to nationwide geographical coverage.
Eur J Obstet Gynecol Reprod Biol
August 2025
Reproductive Medicine Center, Shenzhen Maternity and Child Healthcare Hospital, Southern Medical University, Shenzhen 518000 Guangdong, China; Shenzhen Clinical Research Center for Obstetrics & Gynecology and Reproductive System Diseases, Shenzhen 518000 Guangdong, China. Electronic address: szfyart
Objective: This study investigates the association between alobar holoprosencephaly (HPE) and de novo germline microdeletions in the Xq25 region. To develop a Preimplantation Genetic Testing for Monogenic Disorders (PGT-M) based workflow enabling high-resolution preimplantation detection of sub-Mb microdeletions, overcoming the >1 Mb resolution limit of conventional whole genome amplification(WGA) copy number variation(CNV) sequencing to identify causative Xq25 variants and prevent pathogenic microdeletion transmission.
Methods: This study presents a clinical case involving a couple with an adverse obstetric history accompanied by two occurrences of HPE.
Eur J Obstet Gynecol Reprod Biol
September 2025
Aberdeen Centre for Women's Health Research (ACWHR), Institute Applied Health Sciences, School of Medicine, Medical Sciences & Nutrition, University of Aberdeen, United Kingdom. Electronic address:
Background: Human papillomavirus (HPV) vaccination has reduced rates of cervical cancer. Research suggests that women with HPV, precancerous disease, and prior invasive treatments are at increased risk of preterm birth. This study aimed to determine if there is a reduction in adverse obstetric outcomes for HPV vaccinated women.
View Article and Find Full Text PDFVaccine
September 2025
Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, MI, United States of America.
Context: Records with temporary names, such as Babygirl, BoyA, etc. are sometimes submitted to immunization information systems (IIS) with vaccinations that are administered before the child has a legal name.
Objectives: To 1) apply probabilistic record linkage to assist in the deduplication of children with temporary names in an IIS and 2) assess the impact of that deduplication on vaccination coverage rates.