[PDF] Top 20 Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.
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Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.
... ABSTRACT The purpose of this study was to explore patient and family views on the sharing of their medical data in the context of compiling a ... Voir le document complet
27
Ethical management in the constitution of a European database for leukodystrophies rare diseases.
... members: project members (clinicians and the ethics research group) and independent non-project members, including international experts in medical ethics, human sciences and law professionals ... Voir le document complet
17
Cooperation in the Field of Rare Diseases: A Social Science Perspective
... centralized data repository and a user-friendly online analysis system combining omics data (genomics, proteomics, transcriptomics) with clinical information at individual-patient, family or ... Voir le document complet
31
SARAVÁ: data sharing for online communities in P2P
... Main Project Tasks We plan to pursue parallel work on the following three main tasks: ...P2P data management ...throughout the project as it is very hard to come up with the ... Voir le document complet
6
Unravelling economic solidarity: An alternative view on risk-sharing in the European banking sector
... follows. The first section disentangles the notions of economic solidarity and its complementary responsibility, in order to frame the current debate from a broader perspective which may ... Voir le document complet
27
Overview of the NURESAFE European Project
... 7) The NURESIM software platform 7.1 Overview of the platform The NURESIM software platform comprises predictive computer tools based on state- of-the-art physical models and numerical ... Voir le document complet
12
Sharing data and image processing tools in neuroimaging.
... with the sharing and reuse of brain image data and image processing ...distributed data repositories, containing the image data produced in various research ...viewpoint, ... Voir le document complet
6
Bayesian Approaches for Confirmatory Trials in Rare Diseases: Opportunities and Challenges
... Bayesian; rare disease; prior distribution; meta-analysis; sample size ...as rare depending on the prevalence of the affected patients in the considered ...population. In ... Voir le document complet
10
Estimation of patient-specific mechanical parameters in pulmonary diseases
... personalization The proposed model can be personalized using clin- ical ...a patient- specific geometry of the lungs (volume mesh) and tho- rax (surface mesh), (2) to get a personalized porosity ... Voir le document complet
3
Data sharing in DHT based P2P systems
... solutions. The first one [75] about queries including only equality terms whereas in the second case, PinS proposes a cache including range ...proposals, in the first cache, PinS ... Voir le document complet
28
The expanding spectrum of rare monogenic autoinflammatory diseases.
... Autoinflammatory diseases arise from disorders of the innate immune system [1]. The prototype disease is familial Mediterranean fever (FMF), which belongs to the group of hereditary recurrent ... Voir le document complet
13
Rent sharing in the Clean Development Mechanism<br />The Case of the Tahumanu Hydroelectric Project in Bolivia
... 8 In many Developing Countries, electric power sector reforms and privatisations have been accompanied by a reduction, even by near disappearance of the obligation to electrify rural ...and the local ... Voir le document complet
12
A Family Status for the European Citizen ?
... of the potential it holds – show the progressive influence of European Union law and, within it, European citizenship, on private international family ...seen, the impact of ... Voir le document complet
14
Assessing rare diseases prevalence using literature quantification
... of the diseases themselves can also influence the amount of ...publications. The severity of the disease, often high in rare diseases, can mitigate the prev- ... Voir le document complet
9
Comparative study of statistical methods for detecting association with rare variants in exome-resequencing data
... differences in the mean of Q1 between the four popula- tions ...0.072 in Africans, Chi- nese, Japanese, and Europeans, ...recomputed the type I error accounting for possible ...using ... Voir le document complet
8
Professional clinical guidelines for rare diseases: methodology
... 6th European Conference on Rare Diseases and Orphan Products Brussels, ...and patient decisions about appropri- ate health care for specific clinical circumstances ...common diseases, ... Voir le document complet
2
Privacy Support for Sensitive Data Sharing in P2P Systems
... : data privacy, privacy preferences, P2P data sharing, ...information). In general, PPAs are developed on trusted servers, nevertheless, such servers have the inherent disadvantages of ... Voir le document complet
6
Radioscopy laboratory diagnostic of epizootic diseases in Belgium and European countries
... epizootic diseases in Belgium and European countries Introduction Belgium and other European neighbouring countries faced several emerging and re-emerging diseases as well as zoonotic ... Voir le document complet
1
Why Did King Fasilädäs Kill His Brother? Sharing Power in the Royal Family in Mid-Seventeenth Century Ethiopia
... of the unpublished gädl (hagiography) of Abba Sinoda are ...stored in Dima Giyorgis church, the other one is inserted in Gädlä Täklä Alfa, UNESCO, série 10, ...of the Ethiopic ... Voir le document complet
37
Spatial Data Sharing: A Pilot Study of French SDIs
... information in metadata ...of the recurring arguments in favour of implementing SDI concerns these platforms’ technical capacities to connect databases stored on distributed ...of the 45 SDI ... Voir le document complet
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