The VEDS Collaborative is a group of patients, family members, researchers, and clinicians dedicated to developing a patient-centered plan for scientific research to improve the management of Vascular Ehlers-Danlos Syndrome and increase the quality of life for all those impacted by it.
To sustain a collaborative network of diverse stakeholders, individuals, and organizations, developed through a patient-centered outcomes research initiative (PCORI) to understand patient needs and determine the research methods best suited to study the adverse health implications associated with VEDS.
The VEDS Collaborative is dedicated to supporting the VEDS community in driving patient-centered outcomes research to improve the management of VEDS and increase the quality of life for people impacted by VEDS.
- Maintain the infrastructure necessary for researchers to create and sustain partnerships with patients and other stakeholders that will inform their research work.
- Connect stakeholders with the resources and education necessary to empower them as equitable and meaningful research partners.
- Create cooperative opportunities between patient advocacy organizations and empower them to advance research efforts.
VEDS Natural History Study
The VEDS Collaborative is dedicated to supporting the Vascular Ehlers-Danlos syndrome community in driving patient-centered outcomes research (PCOR) to improve the management of VEDS and increase the quality of life for people impacted by VEDS.
Born out of the work of the VEDS Collaborative, the University of Washington launched this natural history study to define the contribution of known VEDS gene mutations to VEDS complications and outcomes. The researchers are seeking individuals of any age with molecular confirmation of Vascular Ehlers-Danlos Syndrome (i.e., diagnosis through genetic testing results or skin biopsy results) who are willing to share their medical records and radiologic imaging to support a natural history study where the course of VEDS can be followed.
The hope is that this work will lead to treatment guidelines based on the underlying gene mutation and the discovery and/or creation of novel medical practices, diagnostic tools, protective therapies and medicines for the future that will prevent and/or cure the complications of VEDS.
If you are interested in taking part in the study or would like more information, please contact the study team at (206) 353-3076 or firstname.lastname@example.org.
To donate to the VEDS Natural History study, click here.
The VEDS Collaborative is led by Principle Investigator, Dr. Sherene Shalhub, and an advisory group comprised of leaders of major organizations serving the VEDS community, including Katie Wright (The VEDS Movement), Dr. Josephine Grima (The Marfan Foundation), Professor Lara Bloom, (Ehlers-Danlos Society), Jared Griffin (Annabelle’s Challenge), Dave DeMasi (Fight VEDS), and Emma Borreggine (DEFY Foundation), as well as Dr. Peter Byers and Dr. Shaine Morris.
In addition to the advisory group, the VEDS Collaborative is guided by a stakeholder group comprised of members of the community, researchers, and clinicians with an interest in VEDS. The stakeholder group gives opinions on research directives and projects brought to the group for feedback by the advisory group.
If you are someone with VEDS, a family member, a researcher, or a clinician interested in joining the VEDS Collaborative as a stakeholder to provide feedback on research directives and projects during regular virtual meetings, let us know by completing the form below.
Download the Comparative Effectiveness Research (CER) fact sheets developed through the VEDS collaborative for the VEDS Patient-Centered Research Conference in 2019.
Dr. Shalhub Presents VEDS Collaborative Work at the Pacific Northwest Vascular Society Meeting
Meet Dr. Peter Byers and Dr. Sherene Shalhub
Comparative Effectiveness Research Pre-Conference Webinar. The Vascular Ehlers-Danlos Syndrome Research Collaborative.
Collaborators not Cases: Beyond the Once-in-a-Career Diagnosis.
- Characterization of syndromic, nonsyndromic familial, and sporadic type B aortic dissection.
Shalhub S, Rah JY, Campbell R, Sweet MP, Quiroga E, Starnes BW. J Vasc Surg. 2020 PMID: 33249204 (http://www.ncbi.nlm.nih.gov/pubmed/?term=33249204)
- Setting a research agenda for vascular Ehlers-Danlos syndrome using a patient and stakeholder engagement model.
Sage L, Russo ML, Byers PH, Demasi J, Morris SA, Puryear LN, Fulton DS, Shalhub S. J Vasc Surg. 2020 PMID: 32115322 (http://www.ncbi.nlm.nih.gov/pubmed/?term=32115322)
- Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with Vascular Ehlers-Danlos Syndrome.
Shalhub S, Sage L, Demasi J, Wallace SE, Fulton DS, Bloom L, Driessnack M, Byers PH. Ann Vasc Surg. 2020 PMID: 31449940 (http://www.ncbi.nlm.nih.gov/pubmed/?term=31449940)
- A multi-institutional experience in vascular Ehlers-Danlos syndrome diagnosis.
Shalhub S, Byers PH, Hicks KL, Coleman DM, Davis FM, De Caridi G, Weaver KN, Miller EM, Schermerhorn ML, Shean K, Oderich G, Ribeiro M, Nishikawa C, Charlton-Ouw K, Behrendt CA, Debus ES, von Kodolitsch Y, Zarkowsky D, Powell RJ, Pepin M, Milewicz DM, Regalado ES, Lawrence PF, Woo K. J Vasc Surg. 2020 PMID: 31353273 (http://www.ncbi.nlm.nih.gov/pubmed/?term=31353273)
- A multi-institutional experience in the aortic and arterial pathology in individuals with genetically confirmed vascular Ehlers-Danlos syndrome.
Shalhub S, Byers PH, Hicks KL, Charlton-Ouw K, Zarkowsky D, Coleman DM, Davis FM, Regalado ES, De Caridi G, Weaver KN, Miller EM, Schermerhorn ML, Shean K, Oderich G, Ribeiro M, Nishikawa C, Behrendt CA, Debus ES, von Kodolitsch Y, Powell RJ, Pepin M, Milewicz DM, Lawrence PF, Woo K. J Vasc Surg. 2019 PMID: 31126764 (http://www.ncbi.nlm.nih.gov/pubmed/?term=31126764)
- Spontaneous pneumothorax and hemothorax frequently precede the arterial and intestinal complications of vascular Ehlers-Danlos syndrome.
Shalhub S, Neptune E, Sanchez DE, Dua A, Arellano N, McDonnell NB, Milewicz DM. Am J Med Genet A. 2019 PMID: 30793832 (http://www.ncbi.nlm.nih.gov/pubmed/?term=30793832)
- Testing patterns for genetically triggered aortic and arterial aneurysms and dissections at an academic center.
Hicks KL, Byers PH, Quiroga E, Pepin MG, Shalhub S. J Vasc Surg. 2018 PMID: 29510914 (http://www.ncbi.nlm.nih.gov/pubmed/?term=29510914)
- Molecular diagnosis in vascular Ehlers-Danlos syndrome predicts pattern of arterial involvement and outcomes.
Shalhub S, Black JH 3rd, Cecchi AC, Xu Z, Griswold BF, Safi HJ, Milewicz DM, McDonnell NB. J Vasc Surg. 2014 PMID: 24650746 (http://www.ncbi.nlm.nih.gov/pubmed/?term=24650746)