Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic

• Published in: Orphanet journal of rare diseases Vol. 15; no. 1; p. 228
• Main Authors: Brizola, E, Adami, G, Baroncelli, G I, Bedeschi, M F, Berardi, P, Boero, S, Brandi, M L, Casareto, L, Castagnola, E, Fraschini, P, Gatti, D, Giannini, S, Gonfiantini, M V, Landoni, V, Magrelli, A, Mantovani, G, Michelis, M B, Nasto, L A, Panzeri, L, Pianigiani, E, Scopinaro, A, Trespidi, L, Vianello, A, Zampino, G, Sangiorgi, L
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 31.08.2020; BioMed Central; BMC
• Subjects: 2019-nCoV; Aged; Algorithms; Betacoronavirus; Bone diseases; Bone Diseases - complications; Bone Diseases - therapy; Burosumab; Care; Care and treatment; Child; Coronavirus; Coronavirus Infections - complications; Coronavirus Infections - prevention & control; Coronavirus Infections - therapy; Coronaviruses; COVID-19; Disease prevention; Disease transmission; ERN; Female; Fractures; Health care; Humans; Intubation; Medical personnel; Medical research; Oxygen therapy; Pandemics; Pandemics - prevention & control; Patients; Pneumonia; Pneumonia, Viral - complications; Pneumonia, Viral - prevention & control; Pneumonia, Viral - therapy; Position Statement; Pregnancy; Pregnancy complications; Professionals; Rare diseases; Rare Diseases - complications; Rare Diseases - therapy; Remote Consultation - standards; SARS-CoV-2; Severe acute respiratory syndrome coronavirus 2; Telemedicine; Trauma; Ventilators; Viral infections; Wounds and Injuries; Europe; COVID-19; ERN; Rare diseases; Coronavirus; Remote; 2019-nCoV; Bone diseases; Care
• ISSN: 1750-1172; 1750-1172
• DOI: 10.1186/s13023-020-01513-6

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.