scholarly journals The Registry Data Warehouse in the European Reference Network for Rare Respiratory Diseases – Background, Conception and Implementation

2021 ◽  
Author(s):  
Jannik Schaaf ◽  
James Chalmers ◽  
Heymut Omran ◽  
Petra Pennekamp ◽  
Olivier Sitbon ◽  
...  
Keyword(s):  
Data Warehouse ◽  
Data Exchange ◽  
Respiratory Diseases ◽  
Registry Data ◽  
Reference Network ◽  
The European Union ◽  
Aggregated Data ◽  
Cross Border ◽  
European Reference Network ◽  
Registry System

Rare lung diseases affect 1.5–3 million people in Europe while causing bad prognosis or early deaths for patients. The European Reference Network for Respiratory Diseases (ERN-Lung) is a patient centric network, funded by the European Union (EU). The aims of ERN-LUNG is to increase healthcare and research regarding rare respiratory diseases. An initial need for cross-border healthcare and research is the use of registries and databases. A typical problem in registries for RDs is the data exchange, since the registries use different kind of data with different types or descriptions. Therefore, ERN-Lung decided to create a new Registry Data-Warehouse (RDW) where different existing registries are connected to enable cross-border healthcare within ERN-Lung. This work facilitates the aims, conception and implementation for the RDW, while considering a semantic interoperability approach. We created a common dataset (CDS) to have a common descriptions of respiratory diseases patients within the ERN registries. We further developed the RDW based on Open Source Registry System for Rare Diseases (OSSE), which includes a Metadata Repository with the Samply.MDR to unique describe data for the minimal dataset. Within the RDW, data from existing registries is not stored in a central database. The RDW uses the approach of the “Decentral Search” and can send requests to the connected registries, whereas only aggregated data is returned about how many patients with specific characteristics are available. However, further work is needed to connect the different existing registries to the RDW and to perform first studies.

scholarly journals Healthcare data warehouse system supporting cross-border interoperability

2019 ◽  
Vol 26 (2) ◽  
pp. 1321-1332 ◽  
Author(s):  
Goce Gavrilov ◽  
Elena Vlahu-Gjorgievska ◽  
Vladimir Trajkovik
Keyword(s):  
Data Warehouse ◽  
Data Exchange ◽  
Health Data ◽  
Information Networks ◽  
The European Union ◽  
Healthcare Data ◽  
Cross Border ◽  
Contact Points ◽  
Set Up ◽  
Novel Design

The free movement of European citizens across member states of the European Union adds an important level of complexity to strategic efforts of health interoperability. The use of electronic health data has been marked as an important strategic activity and policy to improve healthcare in European countries. Cross-border healthcare depends on the ability to set up shared practices with respect to patient data exchange across the countries. Data flow must comply with demanding security, legal and interoperability requirements, as defined by the European Patients Smart Open Services project specifications. The aim of this article is to propose a novel design of healthcare data warehouse based on the restructured Extract–Transform–Load process. We describe a portal framework that offers a comprehensive set of interoperability services to enable national e-Health platforms to set up cross-border health information networks compliant with European Patients Smart Open Services. The presented approach incorporates the technical and organizational interoperability by interconnecting Health Level Seven standard and Open National Contact Points framework in order to provide a modular, scalable and inter-operating architecture.

scholarly journals Legal Aspects of Telepathology

2000 ◽  
Vol 21 (3-4) ◽  
pp. 97-99 ◽  
Author(s):  
Christian Dierks
Keyword(s):  
International Law ◽  
Data Protection ◽  
Data Exchange ◽  
Legal Aspects ◽  
Spatial Distance ◽  
Standards Of Care ◽  
Security Level ◽  
Private International Law ◽  
The European Union ◽  
Cross Border

In some legal surroundings telepathology is considered a breach of registrational barriers. The recommendation of the G 8 states in Europe for required legislation in telemedicine suggests to recognise that the localization of the remote health care professional defines the site not only of licensure but also of liability. This approach must be considered helpful, since it can solve many problems brought about by the doubtful results of private international law and conventions like the European Union (EU) and Lugano Convention. Under today's conditions in private international law it must be considered essential to agree upon a choice of law and stipulate a court of jurisdiction when doing telepathology. However, the opposing aims of insuring the patients claims and avoiding jurisdictions that exceed the local expectations of the medical professional must be reconciled. Data protection and data security are other crucial topics that require attention. Generally speaking, the principles of minimum data exchange, anonymity, pseudonymity and cryptography must be established as a basis for all telepathology procedures. Only when personal data is needed, its use can be legitimated. Written consent of the patient is advised. To guarantee a cross‐border security level the regulations of the EU‐Data Protection Directive need to be transformed into national law. In practise, cross‐border dataflow shall only take place where the security level can be maintained even within the other country. Finally, reimbursement questions must be answered to establish a sound economical basis for telepathology. The spatial distance between the participants may yield the question, whether the service has been rendered to an extent necessary and sufficient for reimbursement. If reimbursement takes place on a cross‐border or cross‐regional level, severe disturbances of the health systems can occur. Regulation schemes or treaties need therefore to be developed to avoid such disturbances and encompass mutual standards of care as well as methods to balance reimbursement.

scholarly journals The European Reference Network for Rare Neurological Diseases

2021 ◽  
Vol 11 ◽  
Author(s):  
Carola Reinhard ◽  
Anne-Catherine Bachoud-Lévi ◽  
Tobias Bäumer ◽  
Enrico Bertini ◽  
Alicia Brunelle ◽  
...  
Keyword(s):  
Neurological Diseases ◽  
Reference Network ◽  
The European Union ◽  
Clinical Patient ◽  
European Reference Network ◽  
Number Of Patients ◽  
Paroxysmal Disorders ◽  
Cerebellar Ataxias ◽  
Low Prevalence ◽  
Quality Diagnosis

While rare diseases (RDs) are by definition of low prevalence, the total number of patients suffering from an RD is high, and the majority of them have neurologic manifestations, involving central, peripheral nerve, and muscle. In 2017, 24 European Reference Networks (ERNs), each focusing on a specific group of rare or low-prevalence complex diseases, were formed to improve the care for patients with an RD. One major aim is to have “the knowledge travel instead of the patient,” which has been put into practice by the implementation of the Clinical Patient Management System (CPMS) that enables clinicians to perform pan-European virtual consultations. The European Reference Network for Rare Neurological Diseases (ERN-RND) provides an infrastructure for knowledge sharing and care coordination for patients affected by a rare neurological disease (RND) involving the most common central nervous system pathological conditions. It covers the following disease groups: (i) Cerebellar Ataxias and Hereditary Spastic Paraplegias; (ii) Huntington's disease and Other Choreas; (iii) Frontotemporal dementia; (iv) Dystonia, (non-epileptic) paroxysmal disorders, and Neurodegeneration with Brain Iron Accumulation; (v) Leukoencephalopathies; and (vi) Atypical Parkinsonian Syndromes. At the moment, it unites 32 expert centers and 10 affiliated partners in 21 European countries, as well as patient representatives, but will soon cover nearly all countries of the European Union as a result of the ongoing expansion process. Disease expert groups developed and consented on diagnostic flowcharts and disease scales to assess the different aspects of RNDs. ERN-RND has started to discuss diagnostically unclear patients in the CPMS, is one of four ERNs that serve as foundation of Solve-RD, and has established an RND training and education program. The network will facilitate trial readiness through the establishment of an ERN-RND registry with a minimal data of all patients seen at the ERN-RND centers, thus providing a unique overview of existing genotype-based cohorts. The overall aim of the ERNs is to improve access for patients with RDs to quality diagnosis, care, and treatment. Based on this objective, ERNs are monitored by the European Commission on a regular basis to provide transparency and reassurance to the RD community and the general public.

scholarly journals The current landscape of European registries for rare endocrine conditions

2019 ◽  
Vol 180 (1) ◽  
pp. 89-98 ◽  
Author(s):  
S R Ali ◽  
J Bryce ◽  
M Cools ◽  
M Korbonits ◽  
J G Beun ◽  
...  
Keyword(s):  
Overall Response Rate ◽  
Response Rate ◽  
Disorders Of Sex Development ◽  
Participation Rate ◽  
Reference Network ◽  
Cross Border ◽  
Sex Development ◽  
European Reference Network ◽  
International Registry ◽  
Genetic Tumour

Objective To identify cross-border international registries for rare endocrine conditions that are led from Europe and to understand the extent of engagement with these registries within a network of reference centres (RCs) for rare endocrine conditions. Methods Database search of international registries and a survey of RCs in the European Reference Network for rare endocrine conditions (Endo-ERN) with an overall response rate of 82%. Results Of the 42 conditions with orphacodes currently covered within Endo-ERN, international registries exist for 32 (76%). Of 27 registries identified in the Orphanet and RD-Connect databases, Endo-ERN RCs were aware of 11 (41%). Of 21 registries identified by the RC, RD-Connect and Orphanet did not have a record of 10 (48%). Of the 29 glucose RCs, the awareness and participation rate in an international registry was highest for rare diabetes at 75 and 56% respectively. Of the 37 sex development RCs, the corresponding rates were highest for disorders of sex development at 70 and 52%. Of the 33 adrenal RCs, the rates were highest for adrenocortical tumours at 68 and 43%. Of the 43 pituitary RCs, the rates were highest for pituitary adenomas at 43 and 29%. Of the 31 genetic tumour RCs, the rates were highest for MEN1 at 26 and 9%. For the remaining conditions, awareness and participation in registries was less than 25%. Conclusion Although there is a need to develop new registries for rare endocrine conditions, there is a more immediate need to improve the awareness and participation in existing registries.

scholarly journals Constructing Suspicion Through Forensic DNA Databases in the EU. The Views of the Prüm Professionals

2019 ◽  
Vol 60 (1) ◽  
pp. 141-159 ◽  
Author(s):  
Helena Machado ◽  
Rafaela Granja ◽  
Nina Amelung
Keyword(s):  
Data Exchange ◽  
Identification System ◽  
The European Union ◽  
Transnational Governance ◽  
Forensic Dna ◽  
Judicial Cooperation ◽  
Dna Databases ◽  
Eu Member States ◽  
Cross Border ◽  
The Eu

Abstract This article explores the fluid and flexible forms of constructing suspicion, which take shape in transnational governance of crime through forensic DNA databases. The empirical examples are the views of professionals engaged with the so-called Prüm system. This technological identification system was developed to enable DNA data exchange across EU Member States in the context of police and judicial cooperation to control cross-border crime and terrorism. We argue that suspicion is constructed through forms of deterritorializing and reterritorializing assumptions about criminality linked to the movements of suspect communities across the European Union. Transnational crime management is configured through narratives of global expansion of criminal mobility, technical neutrality of DNA identification and the reliance on criminal categorizations of particular national populations.

Improving Cross-Border Seismic Research: The Central and Eastern Europe Earthquake Research Network (CE3RN)

2021 ◽  
Author(s):  
Wolfgang A. Lenhardt ◽  
Damiano Pesaresi ◽  
Mladen Živčić ◽  
Giovanni Costa ◽  
Tomislav Fiket ◽  
...  
Keyword(s):  
Eastern Europe ◽  
Seismic Data ◽  
Data Exchange ◽  
Central And Eastern Europe ◽  
Research Network ◽  
The European Union ◽  
Cross Border ◽  
Earthquake Research ◽  
The Common ◽  
Recent Earthquakes

Abstract The complex tectonic setup of eastern Europe—resulting in strong spatial variations of the local seismic hazard—caused relevant institutions of neighboring countries to form a research cooperation to ease seismological research cooperations across borders. Here, we briefly introduce the original and new Central and Eastern Europe Earthquake Research Network (CE3RN) parties, with a synthesis of the common results achieved so far and an indication of possible future developments. Since the formal establishment of CE3RN, several common projects have been initiated, such as the SeismoSAT Project for the seismic data center connection over satellite and the Historical and Recent Earthquakes in Italy and Austria Project, both funded by the European Union INTERREG Italy–Austria Program. The most recent 22 March 2020 earthquake near Zagreb, resulting in considerable damage in the capital of Croatia, demonstrated the importance of fast data exchange, thus facilitating reliable analysis of the earthquake. In addition, a recent breakdown of data lines in Austria demonstrated the usefulness of alternative data transmission via satellite.

TERRITORIAL COHESION POLICY IN THE CONTEXT OF EU REGIONAL SECURITY

2019 ◽  
Vol 18 (Vol 18, No 4 (2019)) ◽  
pp. 439-453
Author(s):  
Ihor LISHCHYNSKYY
Keyword(s):  
European Union ◽  
Sustainable Development ◽  
Regional Security ◽  
The European Union ◽  
Cohesion Policy ◽  
Cross Border ◽  
Territorial Cohesion ◽  
Interregional Cooperation ◽  
The Eu

The article is devoted to the study of the implementation of territorial cohesion policy in the European Union in order to achieve a secure regional coexistence. In particular, the regulatory and institutional origins of territorial cohesion policy in the EU are considered. The evolution of ontological models of cohesion policy has been outlined. Specifically, the emphasis is placed on the key objective of political geography – effectively combining the need for "territorialization" and the growing importance of networking. The role of urbanization processes in the context of cohesion policy is highlighted. Cross-border dimensions of cohesion policy in the context of interregional cooperation are explored. Particular emphasis is placed on the features of integrated sustainable development strategies.

Dochodzenie roszczeń ze sprzedaży towarów w obrocie międzynarodowym na obszarze UE. Zagadnienie jurysdykcji

2016 ◽  
pp. 107-122
Author(s):  
Agata Michalska-Olek
Keyword(s):  
European Union ◽  
European Parliament ◽  
The European Union ◽  
Community Law ◽  
Judicial Decisions ◽  
Cross Border ◽  
National Jurisdiction ◽  
Recognition And Enforcement ◽  
The Way

The article aims to show the possible ways of judicial redress for claims resulting from sales of goods especially including the issue of jurisdiction and application of the provisions of national law or the provisions of Community law. In the article the provisions of the Convention of 30 October 2007 on jurisdiction and the recognition and enforcement of judgments in civil and commercial matters as well as the provisions of regulations of the European Parliament and of the Council were widely discussed. The author discusses in particular the issue related to cross-border contracts for the sales-of-goods within the European Union. Part of the deliberations concerns judicial rulings, in particular judicial decisions issued in cases in which the court shall consider the issue of jurisdiction of its own motion. In the conclusion of the article it is stated that the choice between the national jurisdiction and the jurisdiction of other states will depend on the terms of agreement between the parties as well as the documents related to the transaction, in particular consignment notes (CMR), and the EXW clauses – such a formulation means that the parties agreed to the way of delivery of goods according to the commercial (Incoterms) clauses, determining in such a way the issue of jurisdiction.

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