The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.
Identifieur interne : 000514 ( PubMed/Curation ); précédent : 000513; suivant : 000515The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.
Auteurs : Neal Mantick [États-Unis] ; Eric Bachman [États-Unis] ; Genevieve Baujat [France] ; Matt Brown [Australie] ; Oliver Collins [Australie] ; Carmen De Cunto [Argentine] ; Patricia Delai [Brésil] ; Marelise Eekhoff [Pays-Bas] ; Roger Zum Felde [Allemagne] ; Donna Roy Grogan [États-Unis] ; Nobuhiko Haga [Japon] ; Edward Hsiao [États-Unis] ; Sharon Kantanie [États-Unis] ; Frederick Kaplan [États-Unis] ; Richard Keen [Royaume-Uni] ; Jelena Milosevic [Serbie] ; Rolf Morhart [Allemagne] ; Robert Pignolo [États-Unis] ; Xiaobing Qian [États-Unis] ; Maja Di Rocco [Italie] ; Christiaan Scott [Afrique du Sud] ; Adam Sherman [États-Unis] ; Marin Wallace [Canada] ; Nicky Williams [Royaume-Uni] ; Keqin Zhang [République populaire de Chine] ; Betsy Bogard [États-Unis]Source :
- Bone [ 1873-2763 ] ; 2017.
Abstract
The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry's patient portal has created a solid foundation upon which to build the largest international registry for monitoring the clinical progression of FOP among patients.
DOI: 10.1016/j.bone.2017.08.032
PubMed: 28866367
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.</title><author><name sortKey="Mantick, Neal" sort="Mantick, Neal" uniqKey="Mantick N" first="Neal" last="Mantick">Neal Mantick</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: mantick.consulting@comcast.net.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author><author><name sortKey="Bachman, Eric" sort="Bachman, Eric" uniqKey="Bachman E" first="Eric" last="Bachman">Eric Bachman</name><affiliation wicri:level="1"><nlm:affiliation>Alexion Pharmaceuticals, 33 Hayden Parkway, Lexington, MA 02421, USA. Electronic address: Eric.Bachman@alexion.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Alexion Pharmaceuticals, 33 Hayden Parkway, Lexington, MA 02421</wicri:regionArea></affiliation></author><author><name sortKey="Baujat, Genevieve" sort="Baujat, Genevieve" uniqKey="Baujat G" first="Genevieve" last="Baujat">Genevieve Baujat</name><affiliation wicri:level="1"><nlm:affiliation>Imagine Institut, Necker Hospital, 149 rue de Sèvres, 75015 Paris, France. Electronic address: genevieve.baujat@nck.aphp.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Imagine Institut, Necker Hospital, 149 rue de Sèvres, 75015 Paris</wicri:regionArea></affiliation></author><author><name sortKey="Brown, Matt" sort="Brown, Matt" uniqKey="Brown M" first="Matt" last="Brown">Matt Brown</name><affiliation wicri:level="1"><nlm:affiliation>Queensland University of Technology, 2 George Street Brisbane, Queensland 4001, Australia. Electronic address: matt.brown@qut.edu.au.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Queensland University of Technology, 2 George Street Brisbane, Queensland 4001</wicri:regionArea></affiliation></author><author><name sortKey="Collins, Oliver" sort="Collins, Oliver" uniqKey="Collins O" first="Oliver" last="Collins">Oliver Collins</name><affiliation wicri:level="1"><nlm:affiliation>FOP, Australia(1).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Australie</country><wicri:regionArea>FOP</wicri:regionArea></affiliation></author><author><name sortKey="De Cunto, Carmen" sort="De Cunto, Carmen" uniqKey="De Cunto C" first="Carmen" last="De Cunto">Carmen De Cunto</name><affiliation wicri:level="1"><nlm:affiliation>Hospital Italiano de Buenos Aires, Juan D. Perón 4190, C1199ABB Ciudad Autónoma de Buenos Aires, Argentina. Electronic address: carmen.decunto@hospitalitaliano.org.ar.</nlm:affiliation><country xml:lang="fr">Argentine</country><wicri:regionArea>Hospital Italiano de Buenos Aires, Juan D. Perón 4190, C1199ABB Ciudad Autónoma de Buenos Aires</wicri:regionArea></affiliation></author><author><name sortKey="Delai, Patricia" sort="Delai, Patricia" uniqKey="Delai P" first="Patricia" last="Delai">Patricia Delai</name><affiliation wicri:level="1"><nlm:affiliation>Santa Casa de Misericordia de São Paulo, Rua Santa Isabel, 305, 5° andar-Vila Buarque, CEP: 01221-010 São Paulo, SP, Brazil.</nlm:affiliation><country xml:lang="fr">Brésil</country><wicri:regionArea>Santa Casa de Misericordia de São Paulo, Rua Santa Isabel, 305, 5° andar-Vila Buarque, CEP: 01221-010 São Paulo, SP</wicri:regionArea></affiliation></author><author><name sortKey="Eekhoff, Marelise" sort="Eekhoff, Marelise" uniqKey="Eekhoff M" first="Marelise" last="Eekhoff">Marelise Eekhoff</name><affiliation wicri:level="1"><nlm:affiliation>Department of Internal Medicine, Section Endocrinology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam, Netherlands. Electronic address: EMW.Eekhoff@vumc.nl.</nlm:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Internal Medicine, Section Endocrinology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam</wicri:regionArea></affiliation></author><author><name sortKey="Zum Felde, Roger" sort="Zum Felde, Roger" uniqKey="Zum Felde R" first="Roger" last="Zum Felde">Roger Zum Felde</name><affiliation wicri:level="1"><nlm:affiliation>FOP e.V., Germany(2).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Allemagne</country><wicri:regionArea>FOP e.V.</wicri:regionArea></affiliation></author><author><name sortKey="Grogan, Donna Roy" sort="Grogan, Donna Roy" uniqKey="Grogan D" first="Donna Roy" last="Grogan">Donna Roy Grogan</name><affiliation wicri:level="1"><nlm:affiliation>Clementia Pharmaceuticals, 275 Grove Street, Suite 2-400, Auburndale, MA 02466, USA. Electronic address: dgrogan@clementiapharma.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Clementia Pharmaceuticals, 275 Grove Street, Suite 2-400, Auburndale, MA 02466</wicri:regionArea></affiliation></author><author><name sortKey="Haga, Nobuhiko" sort="Haga, Nobuhiko" uniqKey="Haga N" first="Nobuhiko" last="Haga">Nobuhiko Haga</name><affiliation wicri:level="1"><nlm:affiliation>The University of Tokyo, 7-3-1 Hongo, Bunkyō, Tokyo 113-8654, Japan. Electronic address: hagan-reh@h.u-tokyo.ac.jp.</nlm:affiliation><country xml:lang="fr">Japon</country><wicri:regionArea>The University of Tokyo, 7-3-1 Hongo, Bunkyō, Tokyo 113-8654</wicri:regionArea></affiliation></author><author><name sortKey="Hsiao, Edward" sort="Hsiao, Edward" uniqKey="Hsiao E" first="Edward" last="Hsiao">Edward Hsiao</name><affiliation wicri:level="1"><nlm:affiliation>University of California-San Francisco, 513 Parnassus Avenue, Room HSE901G, San Francisco, CA 94143-0794, USA. Electronic address: Edward.Hsiao@ucsf.edu.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California-San Francisco, 513 Parnassus Avenue, Room HSE901G, San Francisco, CA 94143-0794</wicri:regionArea></affiliation></author><author><name sortKey="Kantanie, Sharon" sort="Kantanie, Sharon" uniqKey="Kantanie S" first="Sharon" last="Kantanie">Sharon Kantanie</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: together@ifopa.org.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author><author><name sortKey="Kaplan, Frederick" sort="Kaplan, Frederick" uniqKey="Kaplan F" first="Frederick" last="Kaplan">Frederick Kaplan</name><affiliation wicri:level="1"><nlm:affiliation>Perelman School of Medicine, The University of Pennsylvania, c/o Department of Orthopaedic Surgery, Penn Musculoskeletal Center-Suite 600, 3737 Market Street, Philadelphia, PA 19104, USA. Electronic address: Frederick.Kaplan@uphs.upenn.edu.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Perelman School of Medicine, The University of Pennsylvania, c/o Department of Orthopaedic Surgery, Penn Musculoskeletal Center-Suite 600, 3737 Market Street, Philadelphia, PA 19104</wicri:regionArea></affiliation></author><author><name sortKey="Keen, Richard" sort="Keen, Richard" uniqKey="Keen R" first="Richard" last="Keen">Richard Keen</name><affiliation wicri:level="1"><nlm:affiliation>Royal National Orthopaedic Hospital, Stanmore HA7 4LP, UK. Electronic address: Richard.Keen@rnoh.nhs.uk.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Royal National Orthopaedic Hospital, Stanmore HA7 4LP</wicri:regionArea></affiliation></author><author><name sortKey="Milosevic, Jelena" sort="Milosevic, Jelena" uniqKey="Milosevic J" first="Jelena" last="Milosevic">Jelena Milosevic</name><affiliation wicri:level="1"><nlm:affiliation>FOP, Serbia.</nlm:affiliation><country xml:lang="fr">Serbie</country><wicri:regionArea>FOP</wicri:regionArea></affiliation></author><author><name sortKey="Morhart, Rolf" sort="Morhart, Rolf" uniqKey="Morhart R" first="Rolf" last="Morhart">Rolf Morhart</name><affiliation wicri:level="1"><nlm:affiliation>Triftstr.12, 82467 Garmisch-Partenkirchen, Germany. Electronic address: rmorhart@web.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Triftstr.12, 82467 Garmisch-Partenkirchen</wicri:regionArea></affiliation></author><author><name sortKey="Pignolo, Robert" sort="Pignolo, Robert" uniqKey="Pignolo R" first="Robert" last="Pignolo">Robert Pignolo</name><affiliation wicri:level="1"><nlm:affiliation>Robert Pignolo, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA. Electronic address: Pignolo.Robert@mayo.edu.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Robert Pignolo, Mayo Clinic, 200 First Street SW, Rochester, MN 55905</wicri:regionArea></affiliation></author><author><name sortKey="Qian, Xiaobing" sort="Qian, Xiaobing" uniqKey="Qian X" first="Xiaobing" last="Qian">Xiaobing Qian</name><affiliation wicri:level="1"><nlm:affiliation>Regeneron Pharmaceuticals, 777 Old Saw Mill River Road, Tarrytown, NY 10591, USA. Electronic address: Xiaobing.Qian@regeneron.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Regeneron Pharmaceuticals, 777 Old Saw Mill River Road, Tarrytown, NY 10591</wicri:regionArea></affiliation></author><author><name sortKey="Di Rocco, Maja" sort="Di Rocco, Maja" uniqKey="Di Rocco M" first="Maja" last="Di Rocco">Maja Di Rocco</name><affiliation wicri:level="1"><nlm:affiliation>Giannina Gaslini Institute, Via Gerolamo Gaslini 5, 16147 Genoa, Italy. Electronic address: Majadirocco@gaslini.org.</nlm:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Giannina Gaslini Institute, Via Gerolamo Gaslini 5, 16147 Genoa</wicri:regionArea></affiliation></author><author><name sortKey="Scott, Christiaan" sort="Scott, Christiaan" uniqKey="Scott C" first="Christiaan" last="Scott">Christiaan Scott</name><affiliation wicri:level="1"><nlm:affiliation>Red Cross War Memorial Children's Hospital, Room 515, ICH Building, Klipfontein Road, Rondebosch, Cape Town 7700, South Africa. Electronic address: chris.scott@uct.ac.za.</nlm:affiliation><country xml:lang="fr">Afrique du Sud</country><wicri:regionArea>Red Cross War Memorial Children's Hospital, Room 515, ICH Building, Klipfontein Road, Rondebosch, Cape Town 7700</wicri:regionArea></affiliation></author><author><name sortKey="Sherman, Adam" sort="Sherman, Adam" uniqKey="Sherman A" first="Adam" last="Sherman">Adam Sherman</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: adam.sherman@ifopa.org.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author><author><name sortKey="Wallace, Marin" sort="Wallace, Marin" uniqKey="Wallace M" first="Marin" last="Wallace">Marin Wallace</name><affiliation wicri:level="1"><nlm:affiliation>Canadian FOP Network, Canada(3).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Canada</country><wicri:regionArea>Canadian FOP Network</wicri:regionArea></affiliation></author><author><name sortKey="Williams, Nicky" sort="Williams, Nicky" uniqKey="Williams N" first="Nicky" last="Williams">Nicky Williams</name><affiliation wicri:level="1"><nlm:affiliation>FOP Friends (FOP Action), UK(4).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Royaume-Uni</country><wicri:regionArea>FOP Friends (FOP Action)</wicri:regionArea></affiliation></author><author><name sortKey="Zhang, Keqin" sort="Zhang, Keqin" uniqKey="Zhang K" first="Keqin" last="Zhang">Keqin Zhang</name><affiliation wicri:level="1"><nlm:affiliation>Tongji Hospital, Shanghai Tongji University, 389 Xin Cun Road, Shanghai 200065, PR China. Electronic address: keqzhang2007@126.com.</nlm:affiliation><country xml:lang="fr">République populaire de Chine</country><wicri:regionArea>Tongji Hospital, Shanghai Tongji University, 389 Xin Cun Road, Shanghai 200065</wicri:regionArea></affiliation></author><author><name sortKey="Bogard, Betsy" sort="Bogard, Betsy" uniqKey="Bogard B" first="Betsy" last="Bogard">Betsy Bogard</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: betsy.bogard@ifopa.org.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2017">2017</date><idno type="RBID">pubmed:28866367</idno><idno type="pmid">28866367</idno><idno type="doi">10.1016/j.bone.2017.08.032</idno><idno type="wicri:Area/PubMed/Corpus">000516</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000516</idno><idno type="wicri:Area/PubMed/Curation">000514</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">000514</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.</title><author><name sortKey="Mantick, Neal" sort="Mantick, Neal" uniqKey="Mantick N" first="Neal" last="Mantick">Neal Mantick</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: mantick.consulting@comcast.net.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author><author><name sortKey="Bachman, Eric" sort="Bachman, Eric" uniqKey="Bachman E" first="Eric" last="Bachman">Eric Bachman</name><affiliation wicri:level="1"><nlm:affiliation>Alexion Pharmaceuticals, 33 Hayden Parkway, Lexington, MA 02421, USA. Electronic address: Eric.Bachman@alexion.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Alexion Pharmaceuticals, 33 Hayden Parkway, Lexington, MA 02421</wicri:regionArea></affiliation></author><author><name sortKey="Baujat, Genevieve" sort="Baujat, Genevieve" uniqKey="Baujat G" first="Genevieve" last="Baujat">Genevieve Baujat</name><affiliation wicri:level="1"><nlm:affiliation>Imagine Institut, Necker Hospital, 149 rue de Sèvres, 75015 Paris, France. Electronic address: genevieve.baujat@nck.aphp.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Imagine Institut, Necker Hospital, 149 rue de Sèvres, 75015 Paris</wicri:regionArea></affiliation></author><author><name sortKey="Brown, Matt" sort="Brown, Matt" uniqKey="Brown M" first="Matt" last="Brown">Matt Brown</name><affiliation wicri:level="1"><nlm:affiliation>Queensland University of Technology, 2 George Street Brisbane, Queensland 4001, Australia. Electronic address: matt.brown@qut.edu.au.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Queensland University of Technology, 2 George Street Brisbane, Queensland 4001</wicri:regionArea></affiliation></author><author><name sortKey="Collins, Oliver" sort="Collins, Oliver" uniqKey="Collins O" first="Oliver" last="Collins">Oliver Collins</name><affiliation wicri:level="1"><nlm:affiliation>FOP, Australia(1).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Australie</country><wicri:regionArea>FOP</wicri:regionArea></affiliation></author><author><name sortKey="De Cunto, Carmen" sort="De Cunto, Carmen" uniqKey="De Cunto C" first="Carmen" last="De Cunto">Carmen De Cunto</name><affiliation wicri:level="1"><nlm:affiliation>Hospital Italiano de Buenos Aires, Juan D. Perón 4190, C1199ABB Ciudad Autónoma de Buenos Aires, Argentina. Electronic address: carmen.decunto@hospitalitaliano.org.ar.</nlm:affiliation><country xml:lang="fr">Argentine</country><wicri:regionArea>Hospital Italiano de Buenos Aires, Juan D. Perón 4190, C1199ABB Ciudad Autónoma de Buenos Aires</wicri:regionArea></affiliation></author><author><name sortKey="Delai, Patricia" sort="Delai, Patricia" uniqKey="Delai P" first="Patricia" last="Delai">Patricia Delai</name><affiliation wicri:level="1"><nlm:affiliation>Santa Casa de Misericordia de São Paulo, Rua Santa Isabel, 305, 5° andar-Vila Buarque, CEP: 01221-010 São Paulo, SP, Brazil.</nlm:affiliation><country xml:lang="fr">Brésil</country><wicri:regionArea>Santa Casa de Misericordia de São Paulo, Rua Santa Isabel, 305, 5° andar-Vila Buarque, CEP: 01221-010 São Paulo, SP</wicri:regionArea></affiliation></author><author><name sortKey="Eekhoff, Marelise" sort="Eekhoff, Marelise" uniqKey="Eekhoff M" first="Marelise" last="Eekhoff">Marelise Eekhoff</name><affiliation wicri:level="1"><nlm:affiliation>Department of Internal Medicine, Section Endocrinology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam, Netherlands. Electronic address: EMW.Eekhoff@vumc.nl.</nlm:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Internal Medicine, Section Endocrinology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam</wicri:regionArea></affiliation></author><author><name sortKey="Zum Felde, Roger" sort="Zum Felde, Roger" uniqKey="Zum Felde R" first="Roger" last="Zum Felde">Roger Zum Felde</name><affiliation wicri:level="1"><nlm:affiliation>FOP e.V., Germany(2).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Allemagne</country><wicri:regionArea>FOP e.V.</wicri:regionArea></affiliation></author><author><name sortKey="Grogan, Donna Roy" sort="Grogan, Donna Roy" uniqKey="Grogan D" first="Donna Roy" last="Grogan">Donna Roy Grogan</name><affiliation wicri:level="1"><nlm:affiliation>Clementia Pharmaceuticals, 275 Grove Street, Suite 2-400, Auburndale, MA 02466, USA. Electronic address: dgrogan@clementiapharma.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Clementia Pharmaceuticals, 275 Grove Street, Suite 2-400, Auburndale, MA 02466</wicri:regionArea></affiliation></author><author><name sortKey="Haga, Nobuhiko" sort="Haga, Nobuhiko" uniqKey="Haga N" first="Nobuhiko" last="Haga">Nobuhiko Haga</name><affiliation wicri:level="1"><nlm:affiliation>The University of Tokyo, 7-3-1 Hongo, Bunkyō, Tokyo 113-8654, Japan. Electronic address: hagan-reh@h.u-tokyo.ac.jp.</nlm:affiliation><country xml:lang="fr">Japon</country><wicri:regionArea>The University of Tokyo, 7-3-1 Hongo, Bunkyō, Tokyo 113-8654</wicri:regionArea></affiliation></author><author><name sortKey="Hsiao, Edward" sort="Hsiao, Edward" uniqKey="Hsiao E" first="Edward" last="Hsiao">Edward Hsiao</name><affiliation wicri:level="1"><nlm:affiliation>University of California-San Francisco, 513 Parnassus Avenue, Room HSE901G, San Francisco, CA 94143-0794, USA. Electronic address: Edward.Hsiao@ucsf.edu.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>University of California-San Francisco, 513 Parnassus Avenue, Room HSE901G, San Francisco, CA 94143-0794</wicri:regionArea></affiliation></author><author><name sortKey="Kantanie, Sharon" sort="Kantanie, Sharon" uniqKey="Kantanie S" first="Sharon" last="Kantanie">Sharon Kantanie</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: together@ifopa.org.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author><author><name sortKey="Kaplan, Frederick" sort="Kaplan, Frederick" uniqKey="Kaplan F" first="Frederick" last="Kaplan">Frederick Kaplan</name><affiliation wicri:level="1"><nlm:affiliation>Perelman School of Medicine, The University of Pennsylvania, c/o Department of Orthopaedic Surgery, Penn Musculoskeletal Center-Suite 600, 3737 Market Street, Philadelphia, PA 19104, USA. Electronic address: Frederick.Kaplan@uphs.upenn.edu.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Perelman School of Medicine, The University of Pennsylvania, c/o Department of Orthopaedic Surgery, Penn Musculoskeletal Center-Suite 600, 3737 Market Street, Philadelphia, PA 19104</wicri:regionArea></affiliation></author><author><name sortKey="Keen, Richard" sort="Keen, Richard" uniqKey="Keen R" first="Richard" last="Keen">Richard Keen</name><affiliation wicri:level="1"><nlm:affiliation>Royal National Orthopaedic Hospital, Stanmore HA7 4LP, UK. Electronic address: Richard.Keen@rnoh.nhs.uk.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Royal National Orthopaedic Hospital, Stanmore HA7 4LP</wicri:regionArea></affiliation></author><author><name sortKey="Milosevic, Jelena" sort="Milosevic, Jelena" uniqKey="Milosevic J" first="Jelena" last="Milosevic">Jelena Milosevic</name><affiliation wicri:level="1"><nlm:affiliation>FOP, Serbia.</nlm:affiliation><country xml:lang="fr">Serbie</country><wicri:regionArea>FOP</wicri:regionArea></affiliation></author><author><name sortKey="Morhart, Rolf" sort="Morhart, Rolf" uniqKey="Morhart R" first="Rolf" last="Morhart">Rolf Morhart</name><affiliation wicri:level="1"><nlm:affiliation>Triftstr.12, 82467 Garmisch-Partenkirchen, Germany. Electronic address: rmorhart@web.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Triftstr.12, 82467 Garmisch-Partenkirchen</wicri:regionArea></affiliation></author><author><name sortKey="Pignolo, Robert" sort="Pignolo, Robert" uniqKey="Pignolo R" first="Robert" last="Pignolo">Robert Pignolo</name><affiliation wicri:level="1"><nlm:affiliation>Robert Pignolo, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA. Electronic address: Pignolo.Robert@mayo.edu.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Robert Pignolo, Mayo Clinic, 200 First Street SW, Rochester, MN 55905</wicri:regionArea></affiliation></author><author><name sortKey="Qian, Xiaobing" sort="Qian, Xiaobing" uniqKey="Qian X" first="Xiaobing" last="Qian">Xiaobing Qian</name><affiliation wicri:level="1"><nlm:affiliation>Regeneron Pharmaceuticals, 777 Old Saw Mill River Road, Tarrytown, NY 10591, USA. Electronic address: Xiaobing.Qian@regeneron.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>Regeneron Pharmaceuticals, 777 Old Saw Mill River Road, Tarrytown, NY 10591</wicri:regionArea></affiliation></author><author><name sortKey="Di Rocco, Maja" sort="Di Rocco, Maja" uniqKey="Di Rocco M" first="Maja" last="Di Rocco">Maja Di Rocco</name><affiliation wicri:level="1"><nlm:affiliation>Giannina Gaslini Institute, Via Gerolamo Gaslini 5, 16147 Genoa, Italy. Electronic address: Majadirocco@gaslini.org.</nlm:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Giannina Gaslini Institute, Via Gerolamo Gaslini 5, 16147 Genoa</wicri:regionArea></affiliation></author><author><name sortKey="Scott, Christiaan" sort="Scott, Christiaan" uniqKey="Scott C" first="Christiaan" last="Scott">Christiaan Scott</name><affiliation wicri:level="1"><nlm:affiliation>Red Cross War Memorial Children's Hospital, Room 515, ICH Building, Klipfontein Road, Rondebosch, Cape Town 7700, South Africa. Electronic address: chris.scott@uct.ac.za.</nlm:affiliation><country xml:lang="fr">Afrique du Sud</country><wicri:regionArea>Red Cross War Memorial Children's Hospital, Room 515, ICH Building, Klipfontein Road, Rondebosch, Cape Town 7700</wicri:regionArea></affiliation></author><author><name sortKey="Sherman, Adam" sort="Sherman, Adam" uniqKey="Sherman A" first="Adam" last="Sherman">Adam Sherman</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: adam.sherman@ifopa.org.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author><author><name sortKey="Wallace, Marin" sort="Wallace, Marin" uniqKey="Wallace M" first="Marin" last="Wallace">Marin Wallace</name><affiliation wicri:level="1"><nlm:affiliation>Canadian FOP Network, Canada(3).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Canada</country><wicri:regionArea>Canadian FOP Network</wicri:regionArea></affiliation></author><author><name sortKey="Williams, Nicky" sort="Williams, Nicky" uniqKey="Williams N" first="Nicky" last="Williams">Nicky Williams</name><affiliation wicri:level="1"><nlm:affiliation>FOP Friends (FOP Action), UK(4).</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Royaume-Uni</country><wicri:regionArea>FOP Friends (FOP Action)</wicri:regionArea></affiliation></author><author><name sortKey="Zhang, Keqin" sort="Zhang, Keqin" uniqKey="Zhang K" first="Keqin" last="Zhang">Keqin Zhang</name><affiliation wicri:level="1"><nlm:affiliation>Tongji Hospital, Shanghai Tongji University, 389 Xin Cun Road, Shanghai 200065, PR China. Electronic address: keqzhang2007@126.com.</nlm:affiliation><country xml:lang="fr">République populaire de Chine</country><wicri:regionArea>Tongji Hospital, Shanghai Tongji University, 389 Xin Cun Road, Shanghai 200065</wicri:regionArea></affiliation></author><author><name sortKey="Bogard, Betsy" sort="Bogard, Betsy" uniqKey="Bogard B" first="Betsy" last="Bogard">Betsy Bogard</name><affiliation wicri:level="1"><nlm:affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: betsy.bogard@ifopa.org.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116</wicri:regionArea></affiliation></author></analytic><series><title level="j">Bone</title><idno type="eISSN">1873-2763</idno><imprint><date when="2017" type="published">2017</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry's patient portal has created a solid foundation upon which to build the largest international registry for monitoring the clinical progression of FOP among patients.</div></front></TEI><pubmed><MedlineCitation Status="Publisher" Owner="NLM"><PMID Version="1">28866367</PMID><DateCreated><Year>2017</Year><Month>09</Month><Day>03</Day></DateCreated><DateRevised><Year>2017</Year><Month>10</Month><Day>03</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1873-2763</ISSN><JournalIssue CitedMedium="Internet"><PubDate><Year>2017</Year><Month>Sep</Month><Day>01</Day></PubDate></JournalIssue><Title>Bone</Title><ISOAbbreviation>Bone</ISOAbbreviation></Journal><ArticleTitle>The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva.</ArticleTitle><ELocationID EIdType="pii" ValidYN="Y">S8756-3282(17)30327-7</ELocationID><ELocationID EIdType="doi" ValidYN="Y">10.1016/j.bone.2017.08.032</ELocationID><Abstract><AbstractText>The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry is an international, voluntary, observational study that directly captures demographic and disease information initially from patients with FOP (the patient portal) and in the near future from treating physicians (the physician portal) via a secure web-based tool. It was launched by the International FOP Association (IFOPA) with a guiding vision to develop and manage one unified, global, and coordinated Registry allowing the assembly of the most comprehensive data on FOP. This will ultimately facilitate greater access and sharing of patient data and enable better and faster development of therapies and tracking their long-term treatment effectiveness and safety. This report outlines the FOP Connection Registry's design and procedures for data collection and reporting, as well as the long-term sustainability of Registry. Patient-reported, aggregate data are summarized for the first 196 enrolled patients, representing participation from 42 countries and approximately 25% of the world's known FOP population. Fifty-seven percent of the current Registry participants are female with a mean age of 23.8years (median=21years, range=1, 76years). Among the Registry participants who provided their FOP type, 51% reported FOP Classic (R206H), 41% reported FOP Type Unknown, and 8% reported FOP Variant. Patients reported 5.4years (median=3.0years, range=0, 45.8years) as the mean age at which they noticed their first FOP symptoms and a mean age at final FOP diagnosis of 7.5years (median=5.0years, range=0.1, 48.4years). Information on the patients' diagnostic journeys in arriving at a correct diagnosis of FOP is also presented. These early patient-reported data suggest that the IFOPA's vision of one, unified, global, and coordinated approach to the FOP Connection Registry is well underway to being realized. In addition, the positive response from the FOP patient community to the initial launch of the Registry's patient portal has created a solid foundation upon which to build the largest international registry for monitoring the clinical progression of FOP among patients.</AbstractText><CopyrightInformation>Copyright © 2017 Elsevier Inc. All rights reserved.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Mantick</LastName><ForeName>Neal</ForeName><Initials>N</Initials><AffiliationInfo><Affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: mantick.consulting@comcast.net.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bachman</LastName><ForeName>Eric</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Alexion Pharmaceuticals, 33 Hayden Parkway, Lexington, MA 02421, USA. Electronic address: Eric.Bachman@alexion.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Baujat</LastName><ForeName>Genevieve</ForeName><Initials>G</Initials><AffiliationInfo><Affiliation>Imagine Institut, Necker Hospital, 149 rue de Sèvres, 75015 Paris, France. Electronic address: genevieve.baujat@nck.aphp.fr.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Brown</LastName><ForeName>Matt</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Queensland University of Technology, 2 George Street Brisbane, Queensland 4001, Australia. Electronic address: matt.brown@qut.edu.au.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Collins</LastName><ForeName>Oliver</ForeName><Initials>O</Initials><AffiliationInfo><Affiliation>FOP, Australia(1).</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>De Cunto</LastName><ForeName>Carmen</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Hospital Italiano de Buenos Aires, Juan D. Perón 4190, C1199ABB Ciudad Autónoma de Buenos Aires, Argentina. Electronic address: carmen.decunto@hospitalitaliano.org.ar.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Delai</LastName><ForeName>Patricia</ForeName><Initials>P</Initials><AffiliationInfo><Affiliation>Santa Casa de Misericordia de São Paulo, Rua Santa Isabel, 305, 5° andar-Vila Buarque, CEP: 01221-010 São Paulo, SP, Brazil.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Eekhoff</LastName><ForeName>Marelise</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Department of Internal Medicine, Section Endocrinology, VU University Medical Centre, De Boelelaan 1117, 1081 HV Amsterdam, Netherlands. Electronic address: EMW.Eekhoff@vumc.nl.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Zum Felde</LastName><ForeName>Roger</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>FOP e.V., Germany(2).</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Grogan</LastName><ForeName>Donna Roy</ForeName><Initials>DR</Initials><AffiliationInfo><Affiliation>Clementia Pharmaceuticals, 275 Grove Street, Suite 2-400, Auburndale, MA 02466, USA. Electronic address: dgrogan@clementiapharma.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Haga</LastName><ForeName>Nobuhiko</ForeName><Initials>N</Initials><AffiliationInfo><Affiliation>The University of Tokyo, 7-3-1 Hongo, Bunkyō, Tokyo 113-8654, Japan. Electronic address: hagan-reh@h.u-tokyo.ac.jp.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hsiao</LastName><ForeName>Edward</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>University of California-San Francisco, 513 Parnassus Avenue, Room HSE901G, San Francisco, CA 94143-0794, USA. Electronic address: Edward.Hsiao@ucsf.edu.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kantanie</LastName><ForeName>Sharon</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: together@ifopa.org.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kaplan</LastName><ForeName>Frederick</ForeName><Initials>F</Initials><AffiliationInfo><Affiliation>Perelman School of Medicine, The University of Pennsylvania, c/o Department of Orthopaedic Surgery, Penn Musculoskeletal Center-Suite 600, 3737 Market Street, Philadelphia, PA 19104, USA. Electronic address: Frederick.Kaplan@uphs.upenn.edu.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Keen</LastName><ForeName>Richard</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Royal National Orthopaedic Hospital, Stanmore HA7 4LP, UK. Electronic address: Richard.Keen@rnoh.nhs.uk.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Milosevic</LastName><ForeName>Jelena</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>FOP, Serbia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Morhart</LastName><ForeName>Rolf</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Triftstr.12, 82467 Garmisch-Partenkirchen, Germany. Electronic address: rmorhart@web.de.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Pignolo</LastName><ForeName>Robert</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Robert Pignolo, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA. Electronic address: Pignolo.Robert@mayo.edu.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Qian</LastName><ForeName>Xiaobing</ForeName><Initials>X</Initials><AffiliationInfo><Affiliation>Regeneron Pharmaceuticals, 777 Old Saw Mill River Road, Tarrytown, NY 10591, USA. Electronic address: Xiaobing.Qian@regeneron.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>di Rocco</LastName><ForeName>Maja</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Giannina Gaslini Institute, Via Gerolamo Gaslini 5, 16147 Genoa, Italy. Electronic address: Majadirocco@gaslini.org.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Scott</LastName><ForeName>Christiaan</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Red Cross War Memorial Children's Hospital, Room 515, ICH Building, Klipfontein Road, Rondebosch, Cape Town 7700, South Africa. Electronic address: chris.scott@uct.ac.za.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Sherman</LastName><ForeName>Adam</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: adam.sherman@ifopa.org.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Wallace</LastName><ForeName>Marin</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Canadian FOP Network, Canada(3).</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Williams</LastName><ForeName>Nicky</ForeName><Initials>N</Initials><AffiliationInfo><Affiliation>FOP Friends (FOP Action), UK(4).</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Zhang</LastName><ForeName>Keqin</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>Tongji Hospital, Shanghai Tongji University, 389 Xin Cun Road, Shanghai 200065, PR China. Electronic address: keqzhang2007@126.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bogard</LastName><ForeName>Betsy</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>International FOP Association, 1520 Clay St, Suite H2, North Kansas City, MO 64116, USA. Electronic address: betsy.bogard@ifopa.org.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2017</Year><Month>09</Month><Day>01</Day></ArticleDate></Article><MedlineJournalInfo><Country>United States</Country><MedlineTA>Bone</MedlineTA><NlmUniqueID>8504048</NlmUniqueID><ISSNLinking>1873-2763</ISSNLinking></MedlineJournalInfo><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Fibrodysplasia Ossificans Progressiva</Keyword><Keyword MajorTopicYN="N">Heterotopic ossification</Keyword><Keyword MajorTopicYN="N">International FOP Association</Keyword><Keyword MajorTopicYN="N">Natural history</Keyword><Keyword MajorTopicYN="N">Patient-reported</Keyword><Keyword MajorTopicYN="N">Registry</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2017</Year><Month>06</Month><Day>25</Day></PubMedPubDate><PubMedPubDate PubStatus="revised"><Year>2017</Year><Month>08</Month><Day>29</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2017</Year><Month>08</Month><Day>29</Day></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2017</Year><Month>9</Month><Day>4</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2017</Year><Month>9</Month><Day>4</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2017</Year><Month>9</Month><Day>4</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>aheadofprint</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">28866367</ArticleId><ArticleId IdType="pii">S8756-3282(17)30327-7</ArticleId><ArticleId IdType="doi">10.1016/j.bone.2017.08.032</ArticleId></ArticleIdList></PubmedData></pubmed></record>Pour manipuler ce document sous Unix (Dilib)
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