Article

Patients’ Priorities and Expectations on an EU Registry for Rare Bone and Mineral Conditions

2020-12-10

Abstract excerpt

<title>Abstract</title> <p>BackgroundUnderstanding the natural history of rare bone and mineral conditions is essential for improving clinical practice and the development of new diagnostics and therapeutics. Recruitment and long-term participation in registries are key challenges for researchers. To understand the user needs, the European Reference Network on Rare Bone Diseases (ERN BOND) and European Patient Ad...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: 00d99d00-faab-586a-b8c8-6d4a2b9fcc9a
DOI: 10.21203/rs.3.rs-122665/v1

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

Patients’ Priorities and Expectations on an EU Registry for Rare Bone and Mineral ConditionsDOI 10.21203/rs.3.rs-122665/v1Read

Assessing Disease Experience across the Life Span for Individuals with Osteogenesis Imperfecta: Challenges and Opportunities for Patient-Reported Outcomes (PROs) MeasurementSemantic proximity Read

Rare musculoskeletal diseases in adults: a research priority setting partnership with The James Lind AllianceSemantic proximity Read

Anxiety and depression is common in individuals living with a rare disease: exploring the impact of pain and physical activity in UK Biobank dataSemantic proximity Read

Diagnostic journey for individuals with Fibrous Dysplasia / McCune Albright syndrome (FD/MAS)Semantic proximity Read

Prioritization of Research Engaged with Rare Disease Stakeholders: A Systematic Review and Thematic AnalysisSemantic proximity Read

Medical Care Use Among Patients with Monogenic Osteoporosis Due to Rare Variants in LRP5, PLS3, or WNT1.Semantic proximity Read

Patient-Reported Outcomes in a Chinese Cohort of Osteogenesis Imperfecta Unveil Psycho-Physical Stratifications Associated with Clinical ManifestationsSemantic proximity Read

A questionnaire-based study to comprehensively assess the status quo of rare disease patients in ChinaSemantic proximity Read

Self-reported baseline phenotypes from the International Fibrodysplasia Ossificans Progressiva (FOP) Association Global Registry.Semantic proximity Read

Gathering 10 years of real-world FGF23-related hypophosphatemic rickets and osteomalacia data in GCC countries through a non-interventional registry: study protocol.Semantic proximity Read

Quantifying hope: An EU perspective of rare disease therapeutic space and market dynamicsSemantic proximity Read

RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference NetworksSemantic proximity Read