International physician survey on management of FOP: a modified Delphi study
Identifieur interne : 000945 ( Main/Exploration ); précédent : 000944; suivant : 000946International physician survey on management of FOP: a modified Delphi study
Auteurs : Maja Di Rocco [Italie] ; Genevieve Baujat [France] ; Marta Bertamino [Italie] ; Matthew Brown ; Carmen L. De Cunto [Argentine] ; Patricia L. R. Delai ; Elisabeth M. W. Eekhoff [Pays-Bas] ; Nobuhiko Haga [Japon] ; Edward Hsiao [États-Unis] ; Richard Keen ; Rolf Morhart [Allemagne] ; Robert J. Pignolo [États-Unis] ; Frederick S. Kaplan [États-Unis]Source :
- Orphanet Journal of Rare Diseases [ 1750-1172 ] ; 2017.
Abstract
Fibrodysplasia ossificans progressiva (FOP), a disabling disorder of progressive heterotopic ossification (HEO), is caused by heterozygous gain-of- function mutations in Activin receptor A, type I (ACVR1, also known as ALK2), a bone morphogenetic protein (BMP) type I receptor. Presently, symptomatic management is possible, but no definitive treatments are available. Although extensive guidelines for symptomatic management are widely used, regional preferences exist. In order to understand if there was worldwide consensus among clinicians treating FOP patients, an expert panel of physicians directly involved in FOP patient care was convened. Using a modified Delphi method, broad international consensus was reached on four main topics: diagnosis, prevention of flare-ups, patient and family-centered care and general clinical management issues. This study of physician preferences provides a basis for standardization of clinical management for FOP.
Url:
DOI: 10.1186/s13023-017-0659-4
PubMed: 28606101
PubMed Central: 5468985
Affiliations:
- Allemagne, Argentine, France, Italie, Japon, Pays-Bas, États-Unis
- Californie, Minnesota, Pennsylvanie, Région de Kantō, Île-de-France
- Paris, Tokyo
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Pignolo</name><affiliation wicri:level="2"><nlm:aff id="Aff11"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0459 167X</institution-id><institution-id institution-id-type="GRID">grid.66875.3a</institution-id><institution>Department of Medicine, Division of Geriatric Medicine & Gerontology,</institution><institution>Mayo Clinic College of Medicine,</institution></institution-wrap>200 First Street SW, Rochester, MN USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Minnesota</region></placeName><wicri:cityArea>200 First Street SW, Rochester</wicri:cityArea></affiliation></author><author><name sortKey="Kaplan, Frederick S" sort="Kaplan, Frederick S" uniqKey="Kaplan F" first="Frederick S." last="Kaplan">Frederick S. Kaplan</name><affiliation wicri:level="2"><nlm:aff id="Aff12"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0435 1019</institution-id><institution-id institution-id-type="GRID">grid.412713.2</institution-id><institution>Department of Orthopaedic Surgery, Center for Research in FOP & Related Disorders, The Perelman School of Medicine,</institution><institution>The University of Pennsylvania,</institution></institution-wrap>3737 Market Street, Philadelphia, PA 19104 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Pennsylvanie</region></placeName><wicri:cityArea>3737 Market Street, Philadelphia</wicri:cityArea></affiliation></author></analytic><series><title level="j">Orphanet Journal of Rare Diseases</title><idno type="eISSN">1750-1172</idno><imprint><date when="2017">2017</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>Fibrodysplasia ossificans progressiva (FOP), a disabling disorder of progressive heterotopic ossification (HEO), is caused by heterozygous gain-of- function mutations in Activin receptor A, type I (ACVR1, also known as ALK2), a bone morphogenetic protein (BMP) type I receptor. Presently, symptomatic management is possible, but no definitive treatments are available. Although extensive guidelines for symptomatic management are widely used, regional preferences exist. In order to understand if there was worldwide consensus among clinicians treating FOP patients, an expert panel of physicians directly involved in FOP patient care was convened. Using a modified Delphi method, broad international consensus was reached on four main topics: diagnosis, prevention of flare-ups, patient and family-centered care and general clinical management issues. This study of physician preferences provides a basis for standardization of clinical management for FOP.</p></div></front><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Kaplan, Fs" uniqKey="Kaplan F">FS Kaplan</name></author><author><name sortKey="Pignolo, Rj" uniqKey="Pignolo R">RJ Pignolo</name></author><author><name sortKey="Shore, Em" uniqKey="Shore E">EM Shore</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Huning, I" uniqKey="Huning I">I Hüning</name></author><author><name sortKey="Gillessen Kaesbach, G" uniqKey="Gillessen Kaesbach G">G Gillessen-Kaesbach</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Shore, Em" uniqKey="Shore E">EM Shore</name></author><author><name sortKey="Xu, M" uniqKey="Xu M">M Xu</name></author><author><name sortKey="Feldman, Gj" uniqKey="Feldman G">GJ Feldman</name></author><author><name sortKey="Fenstermacher, Da" uniqKey="Fenstermacher D">DA Fenstermacher</name></author><author><name sortKey="Cho, T J" uniqKey="Cho T">T-J Cho</name></author><author><name sortKey="Choi, Ih" uniqKey="Choi I">IH Choi</name></author><author><name sortKey="Connor, Jm" uniqKey="Connor J">JM Connor</name></author><author><name sortKey="Delai, P" uniqKey="Delai P">P Delai</name></author><author><name sortKey="Glaser, Dl" uniqKey="Glaser D">DL Glaser</name></author><author><name sortKey="Le Merrer, M" uniqKey="Le Merrer M">M Le Merrer</name></author><author><name sortKey="Morhart, R" uniqKey="Morhart R">R Morhart</name></author><author><name sortKey="Rogers, Jg" uniqKey="Rogers J">JG Rogers</name></author><author><name sortKey="Smith, R" uniqKey="Smith R">R Smith</name></author><author><name sortKey="Triffitt, Jt" uniqKey="Triffitt J">JT Triffitt</name></author><author><name sortKey="Urtizberea, Ja" uniqKey="Urtizberea J">JA Urtizberea</name></author><author><name sortKey="Zasloff, M" uniqKey="Zasloff M">M Zasloff</name></author><author><name sortKey="Brown, Ma" uniqKey="Brown M">MA Brown</name></author><author><name sortKey="Kaplan, Fs" uniqKey="Kaplan F">FS Kaplan</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Kaplan, Fs" uniqKey="Kaplan F">FS Kaplan</name></author><author><name sortKey="Xu, M" uniqKey="Xu M">M Xu</name></author><author><name sortKey="Seemann, P" uniqKey="Seemann P">P Seemann</name></author><author><name sortKey="Connor, Jm" uniqKey="Connor J">JM Connor</name></author><author><name sortKey="Glaser, Dl" uniqKey="Glaser D">DL Glaser</name></author><author><name sortKey="Carroll, L" uniqKey="Carroll L">L Carroll</name></author><author><name sortKey="Delai, P" uniqKey="Delai P">P Delai</name></author><author><name sortKey="Fastnacht Urban, E" uniqKey="Fastnacht Urban E">E Fastnacht-Urban</name></author><author><name sortKey="Forman, Sj" uniqKey="Forman S">SJ Forman</name></author><author><name sortKey="Gillessen Kaesbach, G" uniqKey="Gillessen Kaesbach G">G Gillessen-Kaesbach</name></author><author><name sortKey="Hoover Fong, J" uniqKey="Hoover Fong J">J Hoover-Fong</name></author><author><name sortKey="Koster, B" uniqKey="Koster B">B Köster</name></author><author><name sortKey="Pauli, Rm" uniqKey="Pauli R">RM Pauli</name></author><author><name sortKey="Reardon, W" uniqKey="Reardon W">W Reardon</name></author><author><name sortKey="Zaidi, S A" uniqKey="Zaidi S">S-A Zaidi</name></author><author><name sortKey="Zasloff, M" uniqKey="Zasloff M">M Zasloff</name></author><author><name sortKey="Morhart, R" uniqKey="Morhart R">R Morhart</name></author><author><name sortKey="Mundlos, S" uniqKey="Mundlos S">S Mundlos</name></author><author><name sortKey="Groppe, J" uniqKey="Groppe J">J Groppe</name></author><author><name sortKey="Shore, Em" uniqKey="Shore E">EM Shore</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Chakkalakal, Sa" uniqKey="Chakkalakal S">SA Chakkalakal</name></author><author><name sortKey="Zhang, D" uniqKey="Zhang D">D Zhang</name></author><author><name sortKey="Culbert, Al" uniqKey="Culbert A">AL Culbert</name></author><author><name sortKey="Convente, Mr" uniqKey="Convente M">MR Convente</name></author><author><name sortKey="Caron, Rj" uniqKey="Caron R">RJ Caron</name></author><author><name sortKey="Wright, Ac" uniqKey="Wright A">AC Wright</name></author><author><name sortKey="Maidment, Ad" uniqKey="Maidment A">AD Maidment</name></author><author><name sortKey="Kaplan, Fs" uniqKey="Kaplan F">FS Kaplan</name></author><author><name sortKey="Shore, Em" uniqKey="Shore E">EM Shore</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Shen, Q" uniqKey="Shen Q">Q Shen</name></author><author><name sortKey="Little, Sc" uniqKey="Little S">SC Little</name></author><author><name sortKey="Xu, M" uniqKey="Xu M">M Xu</name></author><author><name sortKey="Haupt, J" uniqKey="Haupt J">J Haupt</name></author><author><name sortKey="Ast, C" uniqKey="Ast C">C 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uniqKey="Pignolo R">RJ Pignolo</name></author></analytic></biblStruct><biblStruct></biblStruct><biblStruct><analytic><author><name sortKey="Kilmartin, E" uniqKey="Kilmartin E">E Kilmartin</name></author><author><name sortKey="Grunwald, Z" uniqKey="Grunwald Z">Z Grunwald</name></author><author><name sortKey="Kaplan, Fs" uniqKey="Kaplan F">FS Kaplan</name></author><author><name sortKey="Nussbaum, Bl" uniqKey="Nussbaum B">BL Nussbaum</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Levy, Ce" uniqKey="Levy C">CE Levy</name></author><author><name sortKey="Lash, At" uniqKey="Lash A">AT Lash</name></author><author><name sortKey="Janoff, Hb" uniqKey="Janoff H">HB Janoff</name></author><author><name sortKey="Kaplan, Fs" uniqKey="Kaplan F">FS Kaplan</name></author></analytic></biblStruct></listBibl></div1></back></TEI><affiliations><list><country><li>Allemagne</li><li>Argentine</li><li>France</li><li>Italie</li><li>Japon</li><li>Pays-Bas</li><li>États-Unis</li></country><region><li>Californie</li><li>Minnesota</li><li>Pennsylvanie</li><li>Région de Kantō</li><li>Île-de-France</li></region><settlement><li>Paris</li><li>Tokyo</li></settlement></list><tree><noCountry><name sortKey="Brown, Matthew" sort="Brown, Matthew" uniqKey="Brown M" first="Matthew" last="Brown">Matthew Brown</name><name sortKey="Delai, Patricia L R" sort="Delai, Patricia L R" uniqKey="Delai P" first="Patricia L. R." last="Delai">Patricia L. R. Delai</name><name sortKey="Keen, Richard" sort="Keen, Richard" uniqKey="Keen R" first="Richard" last="Keen">Richard Keen</name></noCountry><country name="Italie"><noRegion><name sortKey="Di Rocco, Maja" sort="Di Rocco, Maja" uniqKey="Di Rocco M" first="Maja" last="Di Rocco">Maja Di Rocco</name></noRegion><name sortKey="Bertamino, Marta" sort="Bertamino, Marta" uniqKey="Bertamino M" first="Marta" last="Bertamino">Marta Bertamino</name></country><country name="France"><region name="Île-de-France"><name sortKey="Baujat, Genevieve" sort="Baujat, Genevieve" uniqKey="Baujat G" first="Genevieve" last="Baujat">Genevieve Baujat</name></region></country><country name="Argentine"><noRegion><name sortKey="De Cunto, Carmen L" sort="De Cunto, Carmen L" uniqKey="De Cunto C" first="Carmen L." last="De Cunto">Carmen L. De Cunto</name></noRegion></country><country name="Pays-Bas"><noRegion><name sortKey="Eekhoff, Elisabeth M W" sort="Eekhoff, Elisabeth M W" uniqKey="Eekhoff E" first="Elisabeth M. W." last="Eekhoff">Elisabeth M. W. Eekhoff</name></noRegion></country><country name="Japon"><region name="Région de Kantō"><name sortKey="Haga, Nobuhiko" sort="Haga, Nobuhiko" uniqKey="Haga N" first="Nobuhiko" last="Haga">Nobuhiko Haga</name></region></country><country name="États-Unis"><region name="Californie"><name sortKey="Hsiao, Edward" sort="Hsiao, Edward" uniqKey="Hsiao E" first="Edward" last="Hsiao">Edward Hsiao</name></region><name sortKey="Kaplan, Frederick S" sort="Kaplan, Frederick S" uniqKey="Kaplan F" first="Frederick S." last="Kaplan">Frederick S. Kaplan</name><name sortKey="Pignolo, Robert J" sort="Pignolo, Robert J" uniqKey="Pignolo R" first="Robert J." last="Pignolo">Robert J. Pignolo</name></country><country name="Allemagne"><noRegion><name sortKey="Morhart, Rolf" sort="Morhart, Rolf" uniqKey="Morhart R" first="Rolf" last="Morhart">Rolf Morhart</name></noRegion></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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