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Commonalities and differences in set-up and data collection across European spondyloarthritis registries — results from the EuroSpA collaboration
BackgroundIn European axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) clinical registries, we aimed to investigate commonalities and...
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Unravelling the clinical heterogeneity of undefined recurrent fever over time in the European registries on Autoinflammation
BackgroundSystemic autoinflammatory disorders (SAIDs) represent a growing spectrum of diseases characterized by dysregulation of the innate immune...
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Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries
IntroductionRare disease patient data are typically sensitive, present in multiple registries controlled by different custodians, and...
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Safety outcomes in patients with rheumatoid arthritis treated with abatacept: results from a multinational surveillance study across seven European registries
BackgroundPatients with rheumatoid arthritis (RA) have an increased risk of infection and malignancy compared with the general population. Infection...
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Quality control in cochlear implant therapy: clinical practice guidelines and registries in European countries
PurposeThe treatment with a cochlear implant (CI) is the gold standard in therapy of patients with profound hearing loss or deafness. Successful...
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The importance of pregnancy registries for the management of women with epilepsy and childbearing potential: Emphasis on EURAP
In light of the increased awareness of the teratogenic risks with older-generation antiseizure medications (ASMs) and the introduction of many new...
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Breaking down the fences among registries on autoinflammatory diseases: the E-Merge project
BackgroundAmong the various numbers of different autoinflammatory diseases (AIDs), the absolute majority of them remains rare, with a single...
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Transatlantic registries for minimally invasive liver surgery: towards harmonization
BackgroundSeveral registries focus on patients undergoing minimally invasive liver surgery (MILS). This study compared transatlantic registries...
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Current state of rare disease registries and databases in Australia: a sco** review
BackgroundRare diseases (RDs) affect approximately 8% of all people or > 400 million people globally. The Australian Government’s National Strategic...
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National spine surgery registries’ characteristics and aims: globally accepted standards have yet to be met. Results of a sco** review and a complementary survey
BackgroundSurgery involving implantable devices is widely used to solve several health issues. National registries are essential tools for...
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A systematic overview of rare disease patient registries: challenges in design, quality management, and maintenance
Patient registries serve to overcome the research limitations inherent in the study of rare diseases, where patient numbers are typically small....
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The usage of population and disease registries as pre-screening tools for clinical trials, a systematic review
ObjectiveThis systematic review aims to outline the use of population and disease registries for clinical trial pre-screening.
Materials and methods ...
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Response rates in clinical quality registries and databases that collect patient reported outcome measures: a sco** review
BackgroundPatient Reported Outcome Measures (PROMs) are being increasingly introduced in clinical registries, providing a personal perspective on the...
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Comorbidity data collection across different spine registries: an evidence map
IntroductionComorbidities are significant patient factors that contribute to outcomes after surgery. There is highly variable collection of this...
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Sco** review of the recommendations and guidance for improving the quality of rare disease registries
BackgroundRare disease registries (RDRs) are valuable tools for improving clinical care and advancing research. However, they often vary...
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Collection of Data on Adverse Events Related to Medicinal Products: A Survey Among Registries in the ENCePP Resources Database
IntroductionAs patient registries are not subject to regulatory requirements on the collection of adverse events (AEs) related to medicinal products,...
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Implant breakage after shoulder arthroplasty: a systematic review of data from worldwide arthroplasty registries and clinical trials
BackgroundImplant breakage after shoulder arthroplasty is a rare complication after aseptic loosening, infection or persistent pain, resulting in...
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Health promotion and disease prevention registries in the EU: a cross country comparison
BackgroundHealth promotion and disease prevention programme registries (HPPRs), also called ‘best practice portals’, serve as entry points and...
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Global map** of institutional and hospital-based (Level II–IV) arthroplasty registries: a sco** review
PurposeFour joint arthroplasty registries (JARs) levels exist based on the recorded data type. Level I JARs are national registries that record...
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Patient registries in orthopedics and orthobiologic procedures: a narrative review
There has been increasing evidence and growing popularity of orthobiologic treatments, such as platelet-rich plasma, bone marrow aspirate...
