International multidisciplinary collaboration toward an annotated definition of arthrogryposis multiplex congenita

2019
journal article
article
40
dc.abstract.enArthrogryposis multiplex congenita (AMC) has been described and defined in thousands of articles, but the terminology used has been inconsistent in clinical and research communities. A definition of AMC was recently developed using a modified Delphi consensus method involving 25 experts in the field of AMC from 8 countries. Participants included health care professionals, researchers, and individuals with AMC. An annotation of the definition provides more in‐depth explanations of the different sentences of the AMC definition and is useful to complement the proposed definition. The aim of this study was to provide an annotation of the proposed consensus‐based AMC definition. For the annotation process, 17 experts in AMC representing 10 disciplines across 7 countries participated. A paragraph was developed for each sentence of the definition using an iterative process involving multiple authors with varied and complementary expertise, ensuring all points of view were taken into consideration. The annotated definition provides an overview of the different topics related to AMC and is intended for all stakeholders, including youth and adults with AMC, their families, and clinicians and researchers, with the hopes of unifying the understanding of AMC in the international community.pl
dc.affiliationWydział Nauk o Zdrowiu : Instytut Fizjoterapiipl
dc.cm.date2020-12-02
dc.cm.id95451
dc.contributor.authorDahan-Oliel, Noemipl
dc.contributor.authorCachecho, Sarahpl
dc.contributor.authorBarnes, Douglaspl
dc.contributor.authorBedard, Tanyapl
dc.contributor.authorDavison, Ann M.pl
dc.contributor.authorDieterich, Klauspl
dc.contributor.authorDonohoe, Maureenpl
dc.contributor.authorFąfara, Alicja - 138754 pl
dc.contributor.authorHamdy, Reggiepl
dc.contributor.authorHjartarson, Helgi T.pl
dc.contributor.authorHoffman, Naimisha S.pl
dc.contributor.authorKimber, Evapl
dc.contributor.authorKomolkin, Igorpl
dc.contributor.authorLester, Ruthpl
dc.contributor.authorPonten, Evapl
dc.contributor.authorvan Bosse, Harold J.P.pl
dc.contributor.authorHall, Judith G.pl
dc.date.accession2020-06-29pl
dc.date.accessioned2020-12-02T10:07:33Zpl
dc.date.available2020-12-02T10:07:33Zpl
dc.date.issued2019pl
dc.date.openaccess0
dc.description.accesstimew momencie opublikowania
dc.description.number3pl
dc.description.physical288-299pl
dc.description.points140pl
dc.description.versionostateczna wersja wydawcy
dc.description.volume181pl
dc.identifier.doi10.1002/ajmg.c.31721pl
dc.identifier.eissn1552-4876pl
dc.identifier.issn1552-4868pl
dc.identifier.projectROD UJ / OPpl
dc.identifier.urihttps://ruj.uj.edu.pl/xmlui/handle/item/255971
dc.identifier.weblinkhttps://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31721pl
dc.languageengpl
dc.language.containerengpl
dc.rightsUdzielam licencji. Uznanie autorstwa - Użycie niekomercyjne 4.0 Międzynarodowa*
dc.rights.licenceCC-BY-NC
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/legalcode.pl*
dc.share.typeinne
dc.subject.enannotationpl
dc.subject.enarthrogryposis multiplex congenitapl
dc.subject.encollaborationpl
dc.subject.endefinitionpl
dc.subject.enexpert opinionpl
dc.subtypeArticlepl
dc.titleInternational multidisciplinary collaboration toward an annotated definition of arthrogryposis multiplex congenitapl
dc.title.journalAmerican Journal of Medical Genetics. Part C, Seminars in Medical Geneticspl
dc.typeJournalArticlepl
dspace.entity.typePublication
dc.abstract.enpl
Arthrogryposis multiplex congenita (AMC) has been described and defined in thousands of articles, but the terminology used has been inconsistent in clinical and research communities. A definition of AMC was recently developed using a modified Delphi consensus method involving 25 experts in the field of AMC from 8 countries. Participants included health care professionals, researchers, and individuals with AMC. An annotation of the definition provides more in‐depth explanations of the different sentences of the AMC definition and is useful to complement the proposed definition. The aim of this study was to provide an annotation of the proposed consensus‐based AMC definition. For the annotation process, 17 experts in AMC representing 10 disciplines across 7 countries participated. A paragraph was developed for each sentence of the definition using an iterative process involving multiple authors with varied and complementary expertise, ensuring all points of view were taken into consideration. The annotated definition provides an overview of the different topics related to AMC and is intended for all stakeholders, including youth and adults with AMC, their families, and clinicians and researchers, with the hopes of unifying the understanding of AMC in the international community.
dc.affiliationpl
Wydział Nauk o Zdrowiu : Instytut Fizjoterapii
dc.cm.date
2020-12-02
dc.cm.id
95451
dc.contributor.authorpl
Dahan-Oliel, Noemi
dc.contributor.authorpl
Cachecho, Sarah
dc.contributor.authorpl
Barnes, Douglas
dc.contributor.authorpl
Bedard, Tanya
dc.contributor.authorpl
Davison, Ann M.
dc.contributor.authorpl
Dieterich, Klaus
dc.contributor.authorpl
Donohoe, Maureen
dc.contributor.authorpl
Fąfara, Alicja - 138754
dc.contributor.authorpl
Hamdy, Reggie
dc.contributor.authorpl
Hjartarson, Helgi T.
dc.contributor.authorpl
Hoffman, Naimisha S.
dc.contributor.authorpl
Kimber, Eva
dc.contributor.authorpl
Komolkin, Igor
dc.contributor.authorpl
Lester, Ruth
dc.contributor.authorpl
Ponten, Eva
dc.contributor.authorpl
van Bosse, Harold J.P.
dc.contributor.authorpl
Hall, Judith G.
dc.date.accessionpl
2020-06-29
dc.date.accessionedpl
2020-12-02T10:07:33Z
dc.date.availablepl
2020-12-02T10:07:33Z
dc.date.issuedpl
2019
dc.date.openaccess
0
dc.description.accesstime
w momencie opublikowania
dc.description.numberpl
3
dc.description.physicalpl
288-299
dc.description.pointspl
140
dc.description.version
ostateczna wersja wydawcy
dc.description.volumepl
181
dc.identifier.doipl
10.1002/ajmg.c.31721
dc.identifier.eissnpl
1552-4876
dc.identifier.issnpl
1552-4868
dc.identifier.projectpl
ROD UJ / OP
dc.identifier.uri
https://ruj.uj.edu.pl/xmlui/handle/item/255971
dc.identifier.weblinkpl
https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31721
dc.languagepl
eng
dc.language.containerpl
eng
dc.rights*
Udzielam licencji. Uznanie autorstwa - Użycie niekomercyjne 4.0 Międzynarodowa
dc.rights.licence
CC-BY-NC
dc.rights.uri*
http://creativecommons.org/licenses/by-nc/4.0/legalcode.pl
dc.share.type
inne
dc.subject.enpl
annotation
dc.subject.enpl
arthrogryposis multiplex congenita
dc.subject.enpl
collaboration
dc.subject.enpl
definition
dc.subject.enpl
expert opinion
dc.subtypepl
Article
dc.titlepl
International multidisciplinary collaboration toward an annotated definition of arthrogryposis multiplex congenita
dc.title.journalpl
American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
dc.typepl
JournalArticle
dspace.entity.type
Publication
Affiliations

* The migration of download and view statistics prior to the date of April 8, 2024 is in progress.

Views
8
Views per month
Views per city
Ashburn
3
Wroclaw
2
Dublin
1
Downloads
fafara_et-al_international_multidisciplinary_collaboration_toward_an_annotated_definition_2019.pdf
1