17 research outputs found
An international registry for neurodegeneration with brain iron accumulation
We report the development of an international registry for Neurodegeneration with Brain Iron Accumulation (NBIA), in the context of TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), an EU-FP7-funded project. This registry aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies. This paper describes the content, architecture and future utility of the registry with the intent to capture as many NBIA patients as possible and to offer comprehensive information to the international scientific community
Enhancing reuse of data and biological material in medical research : from FAIR to FAIR-Health
The known challenge of underutilization of data and biological material from biorepositories as potential resources
formedical research has been the focus of discussion for over a decade. Recently developed guidelines for improved
data availability and reusability—entitled FAIR Principles (Findability, Accessibility, Interoperability, and
Reusability)—are likely to address only parts of the problem. In this article,we argue that biologicalmaterial and data
should be viewed as a unified resource. This approach would facilitate access to complete provenance information,
which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for
optimization of long-term storage strategies, as demonstrated in the case of biobanks.Wepropose an extension of the
FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility
and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological
material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human
material and data. These FAIR-Health principles should then be applied to both the biological material and data. We
also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of
volume and breadth of medical data generation, as well as the associated need to process the data efficiently.peer-reviewe
Design and evaluation of a data anonymization pipeline to promote Open Science on COVID-19
The Lean European Open Survey on SARS-CoV-2 Infected Patients (LEOSS) is a European registry for studying the epidemiology and clinical course of COVID-19. To support evidence-generation at the rapid pace required in a pandemic, LEOSS follows an Open Science approach, making data available to the public in real-time. To protect patient privacy, quantitative anonymization procedures are used to protect the continuously published data stream consisting of 16 variables on the course and therapy of COVID-19 from singling out, inference and linkage attacks. We investigated the bias introduced by this process and found that it has very little impact on the quality of output data. Current laws do not specify requirements for the application of formal anonymization methods, there is a lack of guidelines with clear recommendations and few real-world applications of quantitative anonymization procedures have been described in the literature. We therefore believe that our work can help others with developing urgently needed anonymization pipelines for their projects
Design and evaluation of a data anonymization pipeline to promote Open Science on COVID-19
The Lean European Open Survey on SARS-CoV-2 Infected Patients (LEOSS) is a European registry for studying the epidemiology and clinical course of COVID-19. To support evidence-generation at the rapid pace required in a pandemic, LEOSS follows an Open Science approach, making data available to the public in real-time. To protect patient privacy, quantitative anonymization procedures are used to protect the continuously published data stream consisting of 16 variables on the course and therapy of COVID-19 from singling out, inference and linkage attacks. We investigated the bias introduced by this process and found that it has very little impact on the quality of output data. Current laws do not specify requirements for the application of formal anonymization methods, there is a lack of guidelines with clear recommendations and few real-world applications of quantitative anonymization procedures have been described in the literature. We therefore believe that our work can help others with developing urgently needed anonymization pipelines for their projects
An international registry for neurodegeneration with brain iron accumulation
Abstract We report the development of an international registry for Neurodegeneration with Brain Iron Accumulation (NBIA), in the context of TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), an EU-FP7 – funded project. This registry aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies. This paper describes the content, architecture and future utility of the registry with the intent to capture as many NBIA patients as possible and to offer comprehensive information to the international scientific community.</p