Prosjektet etableres fra 1. november 2010 ved Oslo universitetssykehus HF, Ullevål, Avd. for fysikalsk medisin og rehabilitering i samarbeid med TRS kompetansesenter for sjeldne diagnoser, Sunnaas sykehus HF. Prosjektet støttes med tilskudd fra Helsedirektoratet.
Hensikten med prosjektet er:
- å bedre kunnskapen om hypermobilitetssyndromer
- å sikre at pasienter med bindevevssykdommer som innebærer organaffeksjon, blir identifisert og utredet
For mer informasjon om prosjektet, kontakt:
Prosjektmedarbeider Kathrine Hansen
Oslo universitetssykehus HF
Avd. for fysikalsk medisin og rehabilitering
Postboks 4956 Nydalen
Ullevål sykehus
0424 Oslo
Telefon: 23 02 74 44
Aktuell faglitteratur:
BT Tinkle, HA Bird, R Grahame, M Lavallee, HP Levy, D Sillence. The lack of clinical distinction between the hypermobility type of Ehlers–Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome). Am J Med Genet Part A, 2009;149A(11):2368-2370
L Remvig, PH Duhn, S Ullman, J Arokoski, J Jurvelin, A Safi, F Jensen, S Farholt, H Hove, B Juul-Kristensen. Skin signs in Ehlers–Danlos syndrome: clinical tests and para-clinical Methods. Scand J Rheumatol, 2010;iFirst article:1-7
L Remvig, PH Duhn, S Ullman, T Kobayasi, B Hansen, B Juul-Kristensen, JS Jurvelin, J Arokoski. Skin extensibility and consistency in patients with Ehlers–Danlos syndrome and benign joint hypermobility syndrome. Scand J Rheumatol, 2009;38:227-230
B Juul-Kristensen, H Røgind, D V Jensen and L Remvig. Inter-examiner reproducibility of tests and criteria for generalized joint hypermobility and benign joint hypermobility syndrome. Rheumatology, 2007;46:1835-1841
L Remvig, D V Jensen, R C Ward. Epidemiology of General Joint Hypermobility and Basis for the Proposed Criteria for Benign Joint Hypermobility Syndrome: Review of the Literature. J Rheumatology, 2007;34 (4):804-809
S Rand-Hendriksen, LL Wekre, B Paus. Ehlers-Danlos’ syndrom – diagnostikk og subklassifisering. Tidsskr Nor Legeforen, 2006;126(15):1903-1907.
LA Parapia, C Jackson. Ehlers-Danlos syndrome – a historical review. Br J Haematol, 2008;141(1):32-35
P Beigthon et al. Ehlers-Danlos Syndromes: Revised Nosology, Villefranche, 1997. Ehlers-Danlos National Foundation (USA) and Ehlers-Danlos Support Group (UK). American Journal of Medical Genetics 1998; 77:31-7
Fransiska Malfait, MD, PhD, Richard J. Wenstrup, MD, and Anne De Paepe, MD, PhD. Clinical and genetic aspects of Ehlers-Danlos syndrome, classic type. Genetics IN Medicine.Volume 12, Number 10, October 2010
Publisert
15.11.2010 09:11 |
Endret
10.06.2011 13:46