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Journal of Multidisciplinary Healthcare Volume 16, 2023 - Issue
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PERSPECTIVES

Development of a Multidisciplinary Clinic for Patients with Ehlers Danlos Syndromes: Considerations and Strategies

William R Black1 Department of Pediatrics, University of Kansas School of Medicine, Kansas City, KS, USA;2 Center for Children’s Healthy Lifestyles and Nutrition, Children’s Mercy Kansas City, Kansas City, MO, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-1060-0187View further author information
ORCID Icon,
Jordan T Jones1 Department of Pediatrics, University of Kansas School of Medicine, Kansas City, KS, USA;3 Department of Pediatrics, Children’s Mercy Kansas City, Kansas City, MO, USA;4 University of Missouri-Kansas City School of Medicine, Kansas City, MO, USAORCID Iconhttps://orcid.org/0000-0003-0986-4991View further author information
ORCID Icon,
Eric T Rush1 Department of Pediatrics, University of Kansas School of Medicine, Kansas City, KS, USA;3 Department of Pediatrics, Children’s Mercy Kansas City, Kansas City, MO, USA;4 University of Missouri-Kansas City School of Medicine, Kansas City, MO, USAView further author information
,
Lindsey Malloy Walton1 Department of Pediatrics, University of Kansas School of Medicine, Kansas City, KS, USA;3 Department of Pediatrics, Children’s Mercy Kansas City, Kansas City, MO, USA;4 University of Missouri-Kansas City School of Medicine, Kansas City, MO, USAView further author information
&
Ashley Harding5 Children’s Mercy Kansas City, Kansas City, KS, USAView further author information
Pages 191-195 | Received 05 Nov 2022, Accepted 08 Jan 2023, Published online: 21 Jan 2023

References

  • Malfait F, Castori M, Francomano CA, Giunta C, Kosho T, Byers PH. The Ehlers-Danlos syndromes. Nat Rev Dis Primers. 2020;6(1):64. doi:10.1038/s41572-020-0194-9
  • Joseph AW, Joseph SS, Francomano CA, Kontis TC. Characteristics, diagnosis, and management of Ehlers-Danlos syndromes: a review. JAMA Facial Plast Surg. 2018;20(1):70–75. doi:10.1001/jamafacial.2017.0793
  • Tinkle B, Castori M, Berglund B, et al. Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): clinical description and natural history. Am J Med Genet C Semin Med Genet. 2017;175(1):48–69. doi:10.1002/ajmg.c.31538
  • Baeza-Velasco C, Bulbena A, Polanco-Carrasco R, Jaussaud R. Cognitive, emotional, and behavioral considerations for chronic pain management in the Ehlers-Danlos syndrome hypermobility-type: a narrative review. Disabil Rehabil. 2019;41(9):1110–1118. doi:10.1080/09638288.2017.1419294
  • Scheper MC, Engelbert RH, Rameckers EA, Verbunt J, Remvig L, Juul-Kristensen B. Children with generalised joint hypermobility and musculoskeletal complaints: state of the art on diagnostics, clinical characteristics, and treatment. Biomed Res Int. 2013;2013:121054. doi:10.1155/2013/121054
  • Jones JT, Black WR, Cogan W, Callen E. Resource utilization and multidisciplinary care needs for patients with Ehlers-Danlos syndrome. Mol Genet Genomic Med. 2022;10(11):e2057. doi:10.1002/mgg3.2057
  • Jones JT, Black WR. Provider knowledge and experience in care, management, and education of pediatric Ehlers-Danlos syndrome. Glob Pediatr Health. 2022;9:2333794X221112841. doi:10.1177/2333794X221112841
  • Knight DRT, Confiado SM, Bruno KA, et al. Establishing an Ehlers-Danlos syndrome clinic: lessons learned. SN Compr Clin Med. 2022;4(1):138. doi:10.1007/s42399-022-01218-w
  • Mittal N, Mina DS, McGillis L, et al. The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital. Orphanet J Rare Dis. 2021;16(1):357. doi:10.1186/s13023-021-01962-7

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