Registry of Ehlers-Danlos Syndrome (RED)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT04133272|
Recruitment Status : Enrolling by invitation
First Posted : October 21, 2019
Last Update Posted : October 21, 2019
Information provided by (Responsible Party):
Luca Sangiorgi, Istituto Ortopedico Rizzoli
No Study Results Posted on ClinicalTrials.gov for this Study
|Recruitment Status :||Enrolling by invitation|
|Estimated Primary Completion Date :||June 2022|
|Estimated Study Completion Date :||January 2033|
Ritelli M, Rovati C, Venturini M, Chiarelli N, Cinquina V, Castori M, Colombi M. Application of the 2017 criteria for vascular Ehlers-Danlos syndrome in 50 patients ascertained according to the Villefranche nosology. Clin Genet. 2019 Oct 10. doi: 10.1111/cge.13653. [Epub ahead of print]
Ghali N, Sobey G, Burrows N. Ehlers-Danlos syndromes. BMJ. 2019 Sep 18;366:l4966. doi: 10.1136/bmj.l4966. Review.
Black CM, Gathercole LJ, Bailey AJ, Beighton P. The Ehlers-Danlos syndrome: an analysis of the structure of the collagen fibres of the skin. Br J Dermatol. 1980 Jan;102(1):85-96.
Bénistan K, Gillas F. Pain in Ehlers-Danlos syndromes. Joint Bone Spine. 2019 Sep 25. pii: S1297-319X(19)30141-1. doi: 10.1016/j.jbspin.2019.09.011. [Epub ahead of print]
Hausser I. Diagnosis of Ehlers-Danlos syndrome: data deficiency still does not allow establishment of a complete history of the disease and its pathomechanisms. Br J Dermatol. 2019 Aug 20. doi: 10.1111/bjd.18373. [Epub ahead of print]
Jesudas R, Chaudhury A, Laukaitis CM. An update on the new classification of Ehlers-Danlos syndrome and review of the causes of bleeding in this population. Haemophilia. 2019 Jul;25(4):558-566. doi: 10.1111/hae.13800. Epub 2019 Jun 10. Review.
De Baets S, Calders P, Verhoost L, Coussens M, Dewandele I, Malfait F, Vanderstraeten G, Van Hove G, Van de Velde D. Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome". Disabil Rehabil. 2019 Jul 9:1-10. doi: 10.1080/09638288.2019.1636316. [Epub ahead of print]
Copetti M, Morlino S, Colombi M, Grammatico P, Fontana A, Castori M. Severity classes in adults with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders: a pilot study of 105 Italian patients. Rheumatology (Oxford). 2019 Oct 1;58(10):1722-1730. doi: 10.1093/rheumatology/kez029.
Mu W, Muriello M, Clemens JL, Wang Y, Smith CH, Tran PT, Rowe PC, Francomano CA, Kline AD, Bodurtha J. Factors affecting quality of life in children and adolescents with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders. Am J Med Genet A. 2019 Apr;179(4):561-569. doi: 10.1002/ajmg.a.61055. Epub 2019 Jan 31.