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Grants
Canadian Institutes of Health Research (CIHR). Planning & Dissemination Grant - Institute Community Support.
Title: Bridging the Gaps in EDS Care in Canada: Establishing Research Priorities Through Patient-Clinician Collaboration
Time: November 2024 - October 2025
Principal Investigators: Mittal N, Clarke
Co-Investigators: Manocha R, McGillis L, Pag G, Raj S, Rozenberg D, Santa Mina D, Slepian M, Underwood H
Canadian Institutes of Health Research (CIHR). Planning & Dissemination Grant - Institute Community Support.
Title: Respiratory Health in Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders: Advancing Care and Establishing Research Priorities.
Time: November 2024 - October 2025
Principal Investigators: Rozenberg D, Bascom R.
Co-Investigators: Dhawan J, Clarke H, Mittal N, SantaMina D, Harvey, Paula, Satish R, Slepian M, Champagne K, Das S, Truong WT, Belluzzo A, Liu L, Parker C, Thompson E, Ibrahim Masthan M, Wang T, Chapados D, Morello R, Schubart J, Neptune E, Lavallee M, Hashemi S, Cherin N, Sheehan T, Donn A, Trottier M, Silano V, McGillis L, Al Kaabi, N, Clodagh R.
The Ehlers-Danlos Society. Microgrants EDS
Title: Characterizing the Content and Quality of Internet Resources on Exercise Training in Ehlers-Danlos Syndrome (EDS) and Generalized Hypermobility Spectrum Disorder (G-HSD).
Time: June 2023 - May 2024
Principal Investigators: Rozenberg D
Co-Investigators: Dhawan J, Mittal N, SantaMina D, Clarke H, McGillis, L, Truong TW, Al Kaabi N, Bascom R, Schubart J.
University Health Network, Kremblin Research Institute. GoodHope Ehlers-Danlos Syndrome Foundation
Title: Evaluation and Management of Dyspnea in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.
Time: Jan 2021- December 2024
Principal Investigators: Rozenberg D
Co-Investigators: Champagne K, Chow C-W, Goligher E, Huszti E, Kumbhare D, Lopez-Hernandez L, McGillis L, Mittal N, Raj SR, Reid D, Ryan C, Santa Mina D.
Current Projects
Ultrastructure Collagen Markers in EDS
Title: Decrypting the Ultrastructural Collagen Markers Using Quantitative Nano Histology: A Quest for Newer Diagnostic Test in Hypermobile Ehlers-Danlos Syndrome
Aim: This study aims define histo-biophysical markers of two most common types of EDS i.e. classical EDS (cEDS) & hypermobile EDS (hEDS) at the single collagen fibrils level and matrix and to further explore the origin of collagen fibril properties deficiency in hEDS and cEDS.
Using technology to aid in hypermobility assessments
Title: Feasibility of video-based joint hypermobility assessment in individuals with suspected Ehlers-Danlos syndromes/generalized hypermobility spectrum disorders: a single-site observational study protocol
Aim: The aim of this study is to develop a video-based assessment tool to improve the accuracy for assessing joint hypermobility using the Beighton score.
Improving Patient Experience in Exercise and Rehabilitation
Title: Patient Experience in Exercise and Rehabilitation Programs at the Goodhope Ehlers Danlos Syndrome Clinic: a Quality Improvement Initiative
Aim: This initiative aims to gather patient experience data from participants in the GEAR and CORE programs at the GoodHope Ehlers-Danlos Syndrome Clinic, using a structured patient-reported experience survey. By collecting comprehensive, consistent, and actionable feedback, we aim to enable deeper analysis of patient experiences to drive data-informed improvements in care quality and rehabilitation processes. The insights will also guide program enhancements and the development of targeted resources that better address the unique needs of our patient population.
Understanding patient engagement in EDS and G-HSD
Title: Factors Influencing the Engagement of Patients with Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders: A Survey
Aim: This initiative aims to improve understanding about what factors influence engagement of patients with EDS and G-HSD. The insights from this survey will will guide program enhancements based on the unique needs of patients with EDS and HSD
Our Research Funding Sources
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