CovidSeniorV1, Main, Corpus, bibRecord, 000414

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

Identifieur interne : 000414 ( Main/Corpus ); précédent : 000413; suivant : 000415

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

Auteurs : E. Brizola ; G. Adami ; G I Baroncelli ; M F Bedeschi ; P. Berardi ; S. Boero ; M L Brandi ; L. Casareto ; E. Castagnola ; P. Fraschini ; D. Gatti ; S. Giannini ; M V Gonfiantini ; V. Landoni ; A. Magrelli ; G. Mantovani ; M B Michelis ; L A Nasto ; L. Panzeri ; E. Pianigiani ; A. Scopinaro ; L. Trespidi ; A. Vianello ; G. Zampino ; L. Sangiorgi

Source :

Orphanet journal of rare diseases [ 1750-1172 ] ; 2020.

RBID : pubmed:32867855

English descriptors

KwdEn :
- Aged (MeSH), Algorithms (MeSH), Betacoronavirus (MeSH), Bone Diseases (complications), Bone Diseases (therapy), Child (MeSH), Coronavirus Infections (complications), Coronavirus Infections (prevention & control), Coronavirus Infections (therapy), Female (MeSH), Humans (MeSH), Pandemics (prevention & control), Pneumonia, Viral (complications), Pneumonia, Viral (prevention & control), Pneumonia, Viral (therapy), Pregnancy (MeSH), Rare Diseases (complications), Rare Diseases (therapy), Remote Consultation (standards), Wounds and Injuries (MeSH).
MESH :
- complications : Bone Diseases, Coronavirus Infections, Pneumonia, Viral, Rare Diseases.
- prevention & control : Coronavirus Infections, Pandemics, Pneumonia, Viral.
- standards : Remote Consultation.
- therapy : Bone Diseases, Coronavirus Infections, Pneumonia, Viral, Rare Diseases.
- Aged, Algorithms, Betacoronavirus, Child, Female, Humans, Pregnancy, Wounds and Injuries.

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.

DOI: 10.1186/s13023-020-01513-6
PubMed: 32867855
PubMed Central: PMC7456755

Links to Exploration step

pubmed:32867855

Le document en format XML

<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic.</title>
<author><name sortKey="Brizola, E" sort="Brizola, E" uniqKey="Brizola E" first="E" last="Brizola">E. Brizola</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Adami, G" sort="Adami, G" uniqKey="Adami G" first="G" last="Adami">G. Adami</name>
<affiliation><nlm:affiliation>Rheumatology Unit, University of Verona, Verona, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Baroncelli, G I" sort="Baroncelli, G I" uniqKey="Baroncelli G" first="G I" last="Baroncelli">G I Baroncelli</name>
<affiliation><nlm:affiliation>Division of Pediatrics, Department of Obstetrics, Gynecology and Pediatrics, University Hospital, Pisa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Bedeschi, M F" sort="Bedeschi, M F" uniqKey="Bedeschi M" first="M F" last="Bedeschi">M F Bedeschi</name>
<affiliation><nlm:affiliation>Medical Genetic Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Berardi, P" sort="Berardi, P" uniqKey="Berardi P" first="P" last="Berardi">P. Berardi</name>
<affiliation><nlm:affiliation>Italian Osteogenesis Imperfecta Association (As.It.O.I), Olgiate Molgora (LC), Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Boero, S" sort="Boero, S" uniqKey="Boero S" first="S" last="Boero">S. Boero</name>
<affiliation><nlm:affiliation>Department of Paediatric Orthopaedics, IRCCS Giannina Gaslini Institute, Children's Hospital, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Brandi, M L" sort="Brandi, M L" uniqKey="Brandi M" first="M L" last="Brandi">M L Brandi</name>
<affiliation><nlm:affiliation>Department of Experimental Biochemical and Clinical Sciences, University of Florence and Fondazione FIRMO, Florence, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Casareto, L" sort="Casareto, L" uniqKey="Casareto L" first="L" last="Casareto">L. Casareto</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Castagnola, E" sort="Castagnola, E" uniqKey="Castagnola E" first="E" last="Castagnola">E. Castagnola</name>
<affiliation><nlm:affiliation>Infectious Disease Department, Giannina Gaslini Institute, IRCCS, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Fraschini, P" sort="Fraschini, P" uniqKey="Fraschini P" first="P" last="Fraschini">P. Fraschini</name>
<affiliation><nlm:affiliation>Scientific Institute, IRCCS E. Medea, Bosisio Parini (LC), Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Gatti, D" sort="Gatti, D" uniqKey="Gatti D" first="D" last="Gatti">D. Gatti</name>
<affiliation><nlm:affiliation>Rheumatology Unit, University of Verona, Verona, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Giannini, S" sort="Giannini, S" uniqKey="Giannini S" first="S" last="Giannini">S. Giannini</name>
<affiliation><nlm:affiliation>Department of Medicine, Clinica Medica 1, University of Padova and Regional Centre for Osteoporosis, Padua, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Gonfiantini, M V" sort="Gonfiantini, M V" uniqKey="Gonfiantini M" first="M V" last="Gonfiantini">M V Gonfiantini</name>
<affiliation><nlm:affiliation>Rare Diseases and Medical Genetics Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Landoni, V" sort="Landoni, V" uniqKey="Landoni V" first="V" last="Landoni">V. Landoni</name>
<affiliation><nlm:affiliation>Valduce Hospital - Villa Beretta Rehabilitation Centre, Lecco, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Magrelli, A" sort="Magrelli, A" uniqKey="Magrelli A" first="A" last="Magrelli">A. Magrelli</name>
<affiliation><nlm:affiliation>National Center for Drug, Research and Evaluation, Istituto Superiore di Sanità, Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Mantovani, G" sort="Mantovani, G" uniqKey="Mantovani G" first="G" last="Mantovani">G. Mantovani</name>
<affiliation><nlm:affiliation>Endocrinology Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.</nlm:affiliation>
</affiliation>
<affiliation><nlm:affiliation>Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Michelis, M B" sort="Michelis, M B" uniqKey="Michelis M" first="M B" last="Michelis">M B Michelis</name>
<affiliation><nlm:affiliation>Department of Paediatric Orthopaedics, IRCCS Giannina Gaslini Institute, Children's Hospital, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Nasto, L A" sort="Nasto, L A" uniqKey="Nasto L" first="L A" last="Nasto">L A Nasto</name>
<affiliation><nlm:affiliation>Department of Paediatric Orthopaedics, IRCCS Giannina Gaslini Institute, Children's Hospital, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Panzeri, L" sort="Panzeri, L" uniqKey="Panzeri L" first="L" last="Panzeri">L. Panzeri</name>
<affiliation><nlm:affiliation>Italian Osteogenesis Imperfecta Association (As.It.O.I), Olgiate Molgora (LC), Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Pianigiani, E" sort="Pianigiani, E" uniqKey="Pianigiani E" first="E" last="Pianigiani">E. Pianigiani</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Scopinaro, A" sort="Scopinaro, A" uniqKey="Scopinaro A" first="A" last="Scopinaro">A. Scopinaro</name>
<affiliation><nlm:affiliation>Italian Federation of Rare Diseases Patients Associations (UNIAMO FIMR), Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Trespidi, L" sort="Trespidi, L" uniqKey="Trespidi L" first="L" last="Trespidi">L. Trespidi</name>
<affiliation><nlm:affiliation>Obstetrics and Gynecologic Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Vianello, A" sort="Vianello, A" uniqKey="Vianello A" first="A" last="Vianello">A. Vianello</name>
<affiliation><nlm:affiliation>Respiratory Pathophysiology Division, University of Padua, Padua, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Zampino, G" sort="Zampino, G" uniqKey="Zampino G" first="G" last="Zampino">G. Zampino</name>
<affiliation><nlm:affiliation>Rare Diseases and Birth Defects Unit, Dipartimento di Scienza della Salute della Donna, del Bambino e di Sanità Pubblica, Fondazione Policlinico Universitario A. Gemelli IRCCS, Università Cattolica del Sacro Cuore, Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Sangiorgi, L" sort="Sangiorgi, L" uniqKey="Sangiorgi L" first="L" last="Sangiorgi">L. Sangiorgi</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders & CLIBI Laboratory, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy. luca.sangiorgi@ior.It.</nlm:affiliation>
</affiliation>
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<sourceDesc><biblStruct><analytic><title xml:lang="en">Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic.</title>
<author><name sortKey="Brizola, E" sort="Brizola, E" uniqKey="Brizola E" first="E" last="Brizola">E. Brizola</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Adami, G" sort="Adami, G" uniqKey="Adami G" first="G" last="Adami">G. Adami</name>
<affiliation><nlm:affiliation>Rheumatology Unit, University of Verona, Verona, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Baroncelli, G I" sort="Baroncelli, G I" uniqKey="Baroncelli G" first="G I" last="Baroncelli">G I Baroncelli</name>
<affiliation><nlm:affiliation>Division of Pediatrics, Department of Obstetrics, Gynecology and Pediatrics, University Hospital, Pisa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Bedeschi, M F" sort="Bedeschi, M F" uniqKey="Bedeschi M" first="M F" last="Bedeschi">M F Bedeschi</name>
<affiliation><nlm:affiliation>Medical Genetic Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Berardi, P" sort="Berardi, P" uniqKey="Berardi P" first="P" last="Berardi">P. Berardi</name>
<affiliation><nlm:affiliation>Italian Osteogenesis Imperfecta Association (As.It.O.I), Olgiate Molgora (LC), Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Boero, S" sort="Boero, S" uniqKey="Boero S" first="S" last="Boero">S. Boero</name>
<affiliation><nlm:affiliation>Department of Paediatric Orthopaedics, IRCCS Giannina Gaslini Institute, Children's Hospital, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Brandi, M L" sort="Brandi, M L" uniqKey="Brandi M" first="M L" last="Brandi">M L Brandi</name>
<affiliation><nlm:affiliation>Department of Experimental Biochemical and Clinical Sciences, University of Florence and Fondazione FIRMO, Florence, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Casareto, L" sort="Casareto, L" uniqKey="Casareto L" first="L" last="Casareto">L. Casareto</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Castagnola, E" sort="Castagnola, E" uniqKey="Castagnola E" first="E" last="Castagnola">E. Castagnola</name>
<affiliation><nlm:affiliation>Infectious Disease Department, Giannina Gaslini Institute, IRCCS, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Fraschini, P" sort="Fraschini, P" uniqKey="Fraschini P" first="P" last="Fraschini">P. Fraschini</name>
<affiliation><nlm:affiliation>Scientific Institute, IRCCS E. Medea, Bosisio Parini (LC), Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Gatti, D" sort="Gatti, D" uniqKey="Gatti D" first="D" last="Gatti">D. Gatti</name>
<affiliation><nlm:affiliation>Rheumatology Unit, University of Verona, Verona, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Giannini, S" sort="Giannini, S" uniqKey="Giannini S" first="S" last="Giannini">S. Giannini</name>
<affiliation><nlm:affiliation>Department of Medicine, Clinica Medica 1, University of Padova and Regional Centre for Osteoporosis, Padua, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Gonfiantini, M V" sort="Gonfiantini, M V" uniqKey="Gonfiantini M" first="M V" last="Gonfiantini">M V Gonfiantini</name>
<affiliation><nlm:affiliation>Rare Diseases and Medical Genetics Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Landoni, V" sort="Landoni, V" uniqKey="Landoni V" first="V" last="Landoni">V. Landoni</name>
<affiliation><nlm:affiliation>Valduce Hospital - Villa Beretta Rehabilitation Centre, Lecco, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Magrelli, A" sort="Magrelli, A" uniqKey="Magrelli A" first="A" last="Magrelli">A. Magrelli</name>
<affiliation><nlm:affiliation>National Center for Drug, Research and Evaluation, Istituto Superiore di Sanità, Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Mantovani, G" sort="Mantovani, G" uniqKey="Mantovani G" first="G" last="Mantovani">G. Mantovani</name>
<affiliation><nlm:affiliation>Endocrinology Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.</nlm:affiliation>
</affiliation>
<affiliation><nlm:affiliation>Department of Clinical Sciences and Community Health, University of Milan, Milan, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Michelis, M B" sort="Michelis, M B" uniqKey="Michelis M" first="M B" last="Michelis">M B Michelis</name>
<affiliation><nlm:affiliation>Department of Paediatric Orthopaedics, IRCCS Giannina Gaslini Institute, Children's Hospital, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Nasto, L A" sort="Nasto, L A" uniqKey="Nasto L" first="L A" last="Nasto">L A Nasto</name>
<affiliation><nlm:affiliation>Department of Paediatric Orthopaedics, IRCCS Giannina Gaslini Institute, Children's Hospital, Genoa, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Panzeri, L" sort="Panzeri, L" uniqKey="Panzeri L" first="L" last="Panzeri">L. Panzeri</name>
<affiliation><nlm:affiliation>Italian Osteogenesis Imperfecta Association (As.It.O.I), Olgiate Molgora (LC), Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Pianigiani, E" sort="Pianigiani, E" uniqKey="Pianigiani E" first="E" last="Pianigiani">E. Pianigiani</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Scopinaro, A" sort="Scopinaro, A" uniqKey="Scopinaro A" first="A" last="Scopinaro">A. Scopinaro</name>
<affiliation><nlm:affiliation>Italian Federation of Rare Diseases Patients Associations (UNIAMO FIMR), Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Trespidi, L" sort="Trespidi, L" uniqKey="Trespidi L" first="L" last="Trespidi">L. Trespidi</name>
<affiliation><nlm:affiliation>Obstetrics and Gynecologic Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Vianello, A" sort="Vianello, A" uniqKey="Vianello A" first="A" last="Vianello">A. Vianello</name>
<affiliation><nlm:affiliation>Respiratory Pathophysiology Division, University of Padua, Padua, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Zampino, G" sort="Zampino, G" uniqKey="Zampino G" first="G" last="Zampino">G. Zampino</name>
<affiliation><nlm:affiliation>Rare Diseases and Birth Defects Unit, Dipartimento di Scienza della Salute della Donna, del Bambino e di Sanità Pubblica, Fondazione Policlinico Universitario A. Gemelli IRCCS, Università Cattolica del Sacro Cuore, Rome, Italy.</nlm:affiliation>
</affiliation>
</author>
<author><name sortKey="Sangiorgi, L" sort="Sangiorgi, L" uniqKey="Sangiorgi L" first="L" last="Sangiorgi">L. Sangiorgi</name>
<affiliation><nlm:affiliation>Department of Rare Skeletal Disorders & CLIBI Laboratory, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy. luca.sangiorgi@ior.It.</nlm:affiliation>
</affiliation>
</author>
</analytic>
<series><title level="j">Orphanet journal of rare diseases</title>
<idno type="eISSN">1750-1172</idno>
<imprint><date when="2020" type="published">2020</date>
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<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Aged (MeSH)</term>
<term>Algorithms (MeSH)</term>
<term>Betacoronavirus (MeSH)</term>
<term>Bone Diseases (complications)</term>
<term>Bone Diseases (therapy)</term>
<term>Child (MeSH)</term>
<term>Coronavirus Infections (complications)</term>
<term>Coronavirus Infections (prevention & control)</term>
<term>Coronavirus Infections (therapy)</term>
<term>Female (MeSH)</term>
<term>Humans (MeSH)</term>
<term>Pandemics (prevention & control)</term>
<term>Pneumonia, Viral (complications)</term>
<term>Pneumonia, Viral (prevention & control)</term>
<term>Pneumonia, Viral (therapy)</term>
<term>Pregnancy (MeSH)</term>
<term>Rare Diseases (complications)</term>
<term>Rare Diseases (therapy)</term>
<term>Remote Consultation (standards)</term>
<term>Wounds and Injuries (MeSH)</term>
</keywords>
<keywords scheme="MESH" qualifier="complications" xml:lang="en"><term>Bone Diseases</term>
<term>Coronavirus Infections</term>
<term>Pneumonia, Viral</term>
<term>Rare Diseases</term>
</keywords>
<keywords scheme="MESH" qualifier="prevention & control" xml:lang="en"><term>Coronavirus Infections</term>
<term>Pandemics</term>
<term>Pneumonia, Viral</term>
</keywords>
<keywords scheme="MESH" qualifier="standards" xml:lang="en"><term>Remote Consultation</term>
</keywords>
<keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Bone Diseases</term>
<term>Coronavirus Infections</term>
<term>Pneumonia, Viral</term>
<term>Rare Diseases</term>
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<term>Algorithms</term>
<term>Betacoronavirus</term>
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<front><div type="abstract" xml:lang="en">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.</div>
</front>
</TEI>
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<DateCompleted><Year>2020</Year>
<Month>09</Month>
<Day>10</Day>
</DateCompleted>
<DateRevised><Year>2020</Year>
<Month>09</Month>
<Day>10</Day>
</DateRevised>
<Article PubModel="Electronic"><Journal><ISSN IssnType="Electronic">1750-1172</ISSN>
<JournalIssue CitedMedium="Internet"><Volume>15</Volume>
<Issue>1</Issue>
<PubDate><Year>2020</Year>
<Month>08</Month>
<Day>31</Day>
</PubDate>
</JournalIssue>
<Title>Orphanet journal of rare diseases</Title>
<ISOAbbreviation>Orphanet J Rare Dis</ISOAbbreviation>
</Journal>
<ArticleTitle>Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic.</ArticleTitle>
<Pagination><MedlinePgn>228</MedlinePgn>
</Pagination>
<ELocationID EIdType="doi" ValidYN="Y">10.1186/s13023-020-01513-6</ELocationID>
<Abstract><AbstractText>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.</AbstractText>
</Abstract>
<AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Brizola</LastName>
<ForeName>E</ForeName>
<Initials>E</Initials>
<AffiliationInfo><Affiliation>Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.</Affiliation>
</AffiliationInfo>
</Author>
<Author ValidYN="Y"><LastName>Adami</LastName>
<ForeName>G</ForeName>
<Initials>G</Initials>
<AffiliationInfo><Affiliation>Rheumatology Unit, University of Verona, Verona, Italy.</Affiliation>
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Serveur d'exploration sur la COVID chez les séniors

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

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

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