Related Research

I’m collecting links to Ehlers-Danlos Syndrome related research, including research into our many comorbidities, especially the most common two: MCAD and POTS. Please share any other research connections you’re aware of so we can help get funding for these great projects and inform each other about what’s already under way to save spoons and resources for all.

• (A) Study on comorbidity of Atopic Diseases and Connective Tissue Disease – Josh Milner, MD NIH [Completed October 2016 as announced here]
• (B) RCCX and Illness – Sharon Meglathery, MD, Karen Herbst, MD AZ – still seeking funding and bench research to help validate this complex hypothesis behind hEDS and more (see Chronic Constellation)
• (C) A mouse model that may lead to treatment for Vascular EDS –  Hal Dietz, MD Johns Hopkins
• (D) HDCT research into Tenascin-X, Stickler and more – Nazli McDonell, MD NIH [2019 apparently done, see next for one result]
• (E) Heritable disorders of connective tissue: Description of a data repository and initial cohort characterization. 2019 Bascom R¹, Schubart JR², Mills S^1,3, Smith T³, Zukley LM³, Francomano CA^3,4, McDonnell N^3,5.

Although it looks like the McDonnell study above is now closed, the original blog post that led me to it seems to think it’s ongoing, but the NIH seems to indicate it’s closed, as per the last link (E) above. Updates welcome in the comments below or to me at info@ohtwist.com thanks.

I just found the search page for studies of Connective Tissue Disease at the NIH too showing all results there, including closed trials. Via here.

Please email other research I should add to: info@ohtwist.com or share in the comments below. Last updated 2/11/19.

Organizations also tracking and funding some research include:

• EDS Network C.A.R.E.S.
• The Murray-Wood Foundation
• The Ehlers-Danlos Society (The EDS, international scope successor to the EDNF)