Summary of the 3rd international symposium on arthrogryposis.

arthrogryposis assessment tools conference consensus multidisciplinary approach

Journal

American journal of medical genetics. Part C, Seminars in medical genetics
ISSN: 1552-4876
Titre abrégé: Am J Med Genet C Semin Med Genet
Pays: United States
ID NLM: 101235745

Informations de publication

Date de publication:
09 2019
Historique:
received: 28 03 2019
accepted: 29 03 2019
pubmed: 24 5 2019
medline: 23 4 2020
entrez: 24 5 2019
Statut: ppublish

Résumé

The 1st international symposium on arthrogryposis (ISA) was held in 2007 in Birmingham, UK, to bring together a multinational group of experts in the field of arthrogryposis, patients and their families to discuss various aspects of care for individuals with Arthrogryposis Multiplex Congenita (AMC). These "lessons learnt" set the tone for the 2nd ISA held in Saint Petersburg, Russia in 2014. Clinical and research advances have recently been made in the field of arthrogryposis and were shared at the 3rd ISA, in Philadelphia, in 2018. Highlights of the 3ISA and future directions are presented.

Identifiants

pubmed: 31120641
doi: 10.1002/ajmg.c.31705
doi:

Types de publication

Journal Article Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

277-279

Informations de copyright

© 2019 Wiley Periodicals, Inc.

Références

Dahan-Oliel, N., Bedard, T., Darsaklis, V. B., Hall, J. G., van Bosse, H. J. P., & Hamdy, R. C. (2018). Development of a research platform for children with arthrogryposis multiplex congenita: study protocol for a pilot registry. BMJ Open, 8(6), e021377. https://doi.org/10.1136/bmjopen-2017-021377
Dahan-Oliel, N., Cachecho, S., Barnes, D., Bedard, T., Davison, A. M., Dieterich, K., & Hall, J. (In press). International multidisciplinary collaboration towards an annotated definition of arthrogryposis multiplex congenita. American Journal of Medial Genetics Part C.
Dai, S., Dieterich, K., Jaeger, M., Wuyam, B., Jouk, P. S., & Pérennou, D. (2018). Disability in adults with arthrogryposis is severe, partly invisible, and varies by genotype. Neurology, 90(18), e1596-e1604. https://doi.org/10.1212/WNL.0000000000005418
Elfassy, C., Darsaklis, V. B., Snider, L., Gagnon, C., Hamdy, R., & Dahan-Oliel, N. (2019). Rehabilitation needs of youth with arthrogryposis multiplex congenita: Perspectives from key stakeholders. Disability and Rehabilitation, 11, 1-7. https://doi.org/10.1080/09638288.2018.1559364
Filges, I., Tercanli, S., & Hall, J. G. (In press). Fetal arthrogryposis-Challenges on perspectives for prenatal diagnosis and management. American Journal of Medial Genetics Part C.
Hall, J. G., Agranovich, O., Pontén, E., & van Bosse, H. J. (2015). Summary of the 2nd international symposium on arthrogryposis, St. Petersburg, Russia, September 17-19, 2014. American Journal of Medical Genetics Part A, 167A(11), 2866.
Hall, J. G., Aldinger, K. A., & Tanaka, K. I. (2014). Amyoplasia revisited. American Journal of Medical Genetics, 164, 700-730.
Jones, T., Miller, R., Street, J. T., & Sawatzky, B. (2019). Validation of the Oswestry Disability Index for pain and disability in arthrogryposis multiplex congenita. Annals of Physical and Rehabilitation Medicine, 62(2), 92-97. https://doi.org/10.1016/j.rehab.2018.05.1319
Lester, R., Hall, J. G., Pontén, E., & van Bosse, H. J. P. (2017). Background to the 2nd international symposium on arthrogryposis. Journal of Pediatric Orthopaedics, 1, S2-S3.
Nouraei, H., Sawatzky, B., MacGillivray, M., & Hall, J. (2017). Long-term functional and mobility outcomes for individuals with arthrogryposis multiplex congenita. American Journal of Medical Genetics A, 173(5), 1270-1278. https://doi.org/10.1002/ajmg.a.38169
Oberg, K., & Hall, J. G. (In press). Autopsies in arthrogryposis. American Journal of Medical Genetics Part C.
Sawatzky, B., Yadav, S., Davison, A., Dahan-Oliel, N., & Registry Team. (2019). Development of an online registry for adults with arthrogryposis multiplex congenita: A protocol paper. American Journal of Medical Genetics PartC.

Auteurs

Noémi Dahan-Oliel (N)

Shriners Hospital for Children, Montreal, Quebec, Canada.

Judith Hall (J)

Medical Genetics, UBC & Children's & Women's Health Centre of BC, Vancouver, British Columbia, Canada.

Ani Samargian (A)

Arthrogryposis Multiplex Congenita Support Inc, Spartanburg, South Carolina.

Bonita Sawatzky (B)

University of British Columbia, Vancouver, Canada.

Harold van Bosse (H)

Orthopedics, Shriners Hospitals for Children Philadelphia, Philadelphia, Pennsylvania.

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