ArticleOrphanet journal of rare diseases2020
Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic.
Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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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
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 23 citations in OpenAlex.
- Pediatric endocrinopathies related to COVID-19: an update.World journal of pediatrics : WJP · 2023Pooled it
- Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks.The Lancet regional health. Europe · 2026Review
- Transforming clinical trials in rare genetic diseases through telemedicine.Journal of community genetics · 2026Review
- European Reference Networks - a flagship activity of the EU in the field of rare and complex diseases: from 2017 to 2025.Orphanet journal of rare diseases · 2026Review
- Demographic and Clinical Profile of Patients with Osteogenesis Imperfecta Hospitalized Due to Coronavirus Disease (COVID)-19: A Case Series of 13 Patients from Brazil.Healthcare (Basel, Switzerland) · 2025Article
- Policy and practice review consensus statements and clinical guidelines on managing pediatric trauma and orthopedics during the COVID-19 pandemic: a systematic review on the global response for future pandemics and public health crises.Frontiers in pediatrics · 2024Review
- Self-Administration of Burosumab in Children and Adults with X-Linked Hypophosphataemia in Two Open-Label, Single-Arm Clinical Studies.Advances in therapy · 2023Article
- Traumatology: Adoption of the Sm@rtEven Application for the Remote Evaluation of Patients and Possible Medico-Legal Implications.Journal of clinical medicine · 2022Article
- Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic.Frontiers in public health · 2022Article
- The line between COVID-19 pandemic and rare bone diseases.Irish journal of medical science · 2021Article
- SARS-CoV-2 infection and paediatric endocrine disorders: Risks and management considerations.Endocrinology, diabetes & metabolism · 2021Review
- Research and Management of Rare Diseases in the COVID-19 Pandemic Era: Challenges and Countermeasures.Frontiers in public health · 2021Review
- Outcome of COVID19 in Patients With Osteogenesis Imperfecta: A Retrospective Multicenter Study in Saudi Arabia.Frontiers in endocrinology · 2021Article
- The Challenges of Managing Pediatric Diabetes and Other Endocrine Disorders During the COVID-19 Pandemic: Results From an International Cross-Sectional Electronic Survey.Frontiers in endocrinology · 2021Article
Corrections and comments
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Authors and funding
25 authors at 15 institutions in 1 country.
Funding
Abstract
During the COVID-19 outbreak, the European Reference Network on Rare Bone Diseases (ERN BOND) coordination team and Italian rare bone diseases healthcare professionals created the "COVID-19 Helpline for Rare Bone Diseases" in an attempt to provide high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals. The present position statement describes the key characteristics of the Helpline initiative, along with the main aspects and topics that recurrently emerged as central for rare bone diseases patients and professionals. The main topics highlighted are general recommendations, pulmonary complications, drug treatment, trauma, pregnancy, children and elderly people, and patient associations role. The successful experience of the "COVID-19 Helpline for Rare Bone Diseases" launched in Italy could serve as a primer of gold-standard remote care for rare bone diseases for the other European countries and globally. Furthermore, similar COVID-19 helplines could be considered and applied for other rare diseases in order to implement remote patients' care.
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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.