ReviewOrphanet journal of rare diseases2017
European Reference networks for rare diseases: what is the conceptual framework?
Review in Orphanet journal of rare diseases, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 68 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
68 citing papers in PubMed.
- Diagnostic delay, misdiagnosis, and patient-reported psychosocial burden among Chinese individuals with McCune-Albright syndrome: a national cross-sectional survey.Orphanet journal of rare diseases · 2026Article
- Assessment of the 5-year evaluation for 1st call members of the European Reference Network on Rare Endocrine Conditions (Endo-ERN).Endocrine connections · 2026Review
- A mixed-methods evaluation of the quantitative and perceived impact of Brexit on UK oncology clinical trial initiation between 2011 and 2020.Journal of pharmaceutical policy and practice · 2026Article
- European Reference Networks as core health structures where referring genetic newborn screening positive infants: an innovative operational research framework.Frontiers in public health · 2026Article
- ZebraMap: A Multimodal Rare Disease Knowledge Map with Automated Data Aggregation & LLM-Enriched Information Extraction Pipeline.Diagnostics (Basel, Switzerland) · 2025Article
- How social pharmaceutical innovations are addressing problems of availability, accessibility and affordability of drugs for rare diseases.Orphanet journal of rare diseases · 2025Article
- Addressing unmet needs in pregnancy and family planning of people living with rare and low-prevalence diseases: results of the "ERN transversal working group on pregnancy and family planning" survey.Reproductive health · 2025Article
- Enhancing Rare Disease Awareness and Education Among Medical Professionals and Students in Türkiye.Journal of evaluation in clinical practice · 2025Article
- Developing a standard dataset in the European registries for rare endocrine and bone conditions-a Melorheostosis dataset.Orphanet journal of rare diseases · 2025Article
- Pregnancy-related issues in rare and low-prevalence diseases: results of ERN transversal working group on pregnancy and family planning survey.Orphanet journal of rare diseases · 2025Article
- Mapping the rare disease paediatric clinical trial availabilities in Europe.Frontiers in pediatrics · 2025Article
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Epidemiology, management and patient needs in myasthenia gravis: an Italian multistakeholder consensus based on Delphi methodology.BMJ open · 2024Article
- Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.Scientific reports · 2024Article
- EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders.Orphanet journal of rare diseases · 2024Review
- Diagnostic journey for individuals with fibrous dysplasia / McCune albright syndrome (FD/MAS).Orphanet journal of rare diseases · 2024Article
- Rare diseases: still on the fringes of universal health coverage in Europe.The Lancet regional health. Europe · 2024Review
- Development of the CDISC Pediatrics User Guide: a CDISC and conect4children collaboration.Frontiers in medicine · 2024Article
- Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases.European journal of medical genetics · 2023Article
- European multidisciplinary tumor boards support cross-border networking and increase treatment options for patients with rare gynecological tumors.International journal of gynecological cancer : official journal of the International Gynecological Cancer Society · 2023Article
8 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
With the Cross-Border Healthcare Directive (2011/24/EU) a mandatory framework was established to foster cooperation on a voluntary basis, within European Reference Networks (ERNs). These networks are composed of centres and healthcare providers. The exchange of knowledge is a central issue in this context. A detailed literature survey was carried out to determine the most important factors affecting information and knowledge exchange, as well as learning, in networks and how this can be supported. New communication technologies are identified as key tools for the European Reference Networks (ERN). This study recommends the elaboration of a systematic knowledge use and knowledge generation plan. The data of this study suggests that the future ERNs will mediate the adoption of the digitised and networked information society in medical practice.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.