The ILC Research Program
The ILC Research Committee
Mandate
Created in 2021 under the direction of the Executive Committee and governed by The ILC Charitable Foundation, O/A EDS Canada Foundation By Laws, the Research Committee’s mandate is to excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and knowledge mobilization into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system.
The EDS Canada Foundation Research Committee was designed to respond to the evolving needs for health research and seeks to bridge gaps in health research in Canada by:
- funding both investigator-initiated research as well as research on targeted priority areas of Hereditary Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders, and comorbid conditions, Heritable Connective Tissue Disorders and secondary Chronic Pain.
- focusing on knowledge mobilization and translation that facilitates the application of the results of research and their transformation into new policies, practices, procedures, products, and services.
Committee Members & Rotating Chair & Secretary
- Jessica Chuchin
- Kathleen Wynne-Edwards
- Jacqueline Raposo
- Tammy Stadt
Reporting to:
Board of Directors
The Research Committee can be reached at [email protected]
The 2025 EDS Canada Foundation Student Fellowship / Research Award Competition
EDS Canada Foundation is offering one student fellowship or research grant of up to $7,000.00 to be held for up to one year starting in May or September 2025.
Key Dates:
Online Research Grants Portal open: Last day of February annually
Full Application deadline: March 15th, 2025 at 5:00 PM EST
Notification of decision: April 1, 2025
Funding start date: May 1 or September 1, 2025
Please see the eligibility and requirements section prior to creating an application.
1. Description
The purpose of this program is to allow a promising student to engage in research that is in an area of clear relevance to Ehlers-Danlos Syndromes. Whether the funds are taken as a research grant, or as a student stipend, an appropriate academic supervisor must be approved by EDS Canada Foundation before the funds are released. The proposed program must include direct involvement in research with an intent to publish in the peer reviewed literature. It is expected that the grantee will be spending at least 75% of his/her/their time conducting research during their award interval.
2. Consumer/Patient-Engagement
EDS Canada Foundation strongly values the voice of patients and caregivers from research design through to the peer review process. Applicants are encouraged to consider this in their submission.
3. Eligibility
To be eligible, applicants must:
3.1 Be enrolled on a full-time basis as a student or trainee at an eligible research institution in Canada, working on a research project that is relevant to one or both of the research theme(s) identified in EDS Canada Foundation’s research program to: (1) improving our understanding of Ehlers-Danlos Syndromes and finding potential cures, and (2) improving the care and management of Ehlers-Danlos Syndromes;
3.2 Be about to enter the Honours year of an undergraduate 4-year degree or be enrolled in more advanced training. The area of study is not constrained, only the relevance to Ehlers-Danlos Syndromes;
3.3 If appropriate for the proposed research, the student is welcome to request access to resources, feedback, and mentorship from EDS Canada Foundation.
3.4 Successful trainees must agree to recognize the support of EDS Canada Foundation in all posters, presentations, and publications, including online publications and should designate themselves as EDS Canada Foundation Trainee Scholar (2024); and
3.5 The awardee must provide a report on their research progress to EDS Canada Foundation on or before the one-year anniversary of starting the award, and this report can be written or in the form of a public presentation to EDS Canada Foundation community.
4. Award Amount and Term
In 2024, EDS Canada Foundation will fund up one project or student stipend with a budget not exceeding $7,000.00. Please note that these funds are eligible and encouraged to be leveraged as matching funds. The award is non-renewable. There are no constraints on holding these funds in conjunction with other scholarships or grants.
5. Application
All submissions will be screened for completeness and eligibility. Note that incomplete applications by the deadline will be deemed ineligible and withdrawn from the competition. It is the responsibility of the applicant to ensure that applications are complete at the time of submission. All applicants are strongly advised to read all program documentation listed below. If you have any questions, please contact us at [email protected].
A maximum of one application per trainee will be permitted. Applications must be submitted through EDS Canada Foundation’s online application system and include the following components:
Scientific abstract (Max. 500 words)
Project description (Max. 2500 words)
References (Max. 32,000 characters)
Relevance of the proposal to one or both of the EDS Canada Foundation’s research theme(s): (1) Improving our understanding of Ehlers-Danlos Syndromes and finding potential cures; and (2) improving the care and management of Ehlers-Danlos Syndromes (Max. 500 words)
Lay summary sections (Max. 100-150 words per section)
Knowledge translation (KTE) plan section (Max. 250 words per section)
6. Required Attachments
Signature page (candidate, supervisor(s), department head and Host Institution)
Candidate and supervisor(s) Canadian Common CV (Your preferred tricouncil (CIHR, SSHRC or NSERC format)
Official transcripts of the candidate’s undergraduate and/or graduate training
Timeline and milestones (1 pg diagram / chart)
Three letters of support, including one from the candidate’s primary supervisor outlining the value of the award to the candidate, the research environment, any out-of-discipline training or mentorship and details of the source of matched funding. The other two letters can come from identified knowledge users or other experts in the research area.
7. Decision Process/Peer Review
The membership of EDS Canada Foundation Research Committee will conduct a peer review process including both scholars and patients who will provide feedback on the relevance, impact, and feasibility of the proposed research. A summary of that feedback will be provided with the award decision. Applicants should familiarize themselves with the materials on the website including, for example, Strategic Themes. The review criteria for applications will include, but not necessarily be restricted to the following:
7.1 Quality of the candidate and research environment:
Strength of the CVs, transcripts, letters of support etc.
Strength of the research and training environment
Strength and appropriateness of the supervision
7.2 Potential impact of the research:
Quality of the research project
Relevance of the research project and its potential to create new knowledge, improve care or support, decrease the burden of illness, and improve quality of life.
7.3 Feasibility:
Feasibility of the proposed research project within the time frame and research environment.
8. Host Institution requirements
In addition to the requirements set out in the Host Institution agreement, Host Institutions must ensure that all required certifications, from human ethics to handling of biological specimens and protection of sensitive data are in place before research begins. Grants are made only with the consent and knowledge of the administrative head of the institution at which they are to be held and institutions must abide by the policies contained in the Host Institution/EDS Canada Foundation Agreement.
9. Annual progress and end of grant reports
Investigators must provide a detailed financial accounting (within 90 days of grant year-end), summary of progress, a list of publications and presentations associated with the grant, details on trainees, and impacts of their research. Investigators will also be asked to list any activities that have helped to promote EDS Canada Foundation. As impacts of research may occur beyond the termination date, grantees must submit a “Post Grant” report two years after the grant termination date. The report will capture publications, status of trainees, etc.
10. Publication and Open Access Dissemination:
Grantees are required to supply EDS Canada Foundation Research Committee with copies of posters, presentations, and publications. The funder acknowledgement must be included in any disseminated materials. EDS Canada Foundation’s open access policy requires that research findings be made publicly available within twelve months of the peer-review publication date to ensure accessibility to the EDS Canada Foundation Community. The EDS Canada Foundation logo is available for use in visual materials.
Strategic Research Themes
Theme I: Improving our understanding of Ehlers-Danlos Syndromes and finding potential cures.
Research under this theme will seek to improve understanding of the causes of Ehlers-Danlos Syndromes in order to develop new approaches to alleviate the pain, neurological deficits and prevent and/or slow the progression of disease, improve quality of life, and potentially cure those affected by Ehlers-Danlos Syndromes.
Research programs relevant to Strategic Theme I will have a main objective of one of the following goals:
1.1 Understanding the mechanisms that contribute to the pentad super-syndrome of dysautonomia, mast cell activation syndrome, Ehlers-Danlos Syndromes, gastroparesis, and autoimmunity
1.2 Understanding Ehlers-Danlos Syndromes and Ehlers-Danlos Syndromes pain pathophysiology and identifying therapeutic opportunities;
1.3 Identifying and characterizing risk, and causal factors and/or development of Ehlers-Danlos Syndromes pain (including: biologic and endogenous factors; physical environment; and, psychological, social and economic factors);
1.4 Discovering, developing and evaluating diagnostic (early detection), prognostic and predictive markers and technologies (such as imaging, diagnostic and other assessment tools) of disease (including: biomarker discovery and evaluation);
1.5 Discovering, developing and evaluating potential therapeutic interventions in model systems and preclinical settings. (Including: pharmaceuticals; biologics; gene/cell/tissue therapies; medical devices; surgery, including neurosurgery; and physical agents – including physical therapy, radiotherapy, ultrasound, laser and phototherapy).
Theme II: Improving the care and management of Ehlers-Danlos Syndromes
Research under this theme will seek to uncover new knowledge that will inform better ways to optimize the health of people with Ehlers-Danlos Syndromes through improved treatment, management and self-care strategies.
Research programs relevant to Strategic Theme II will include intervention research, observational studies and systematic reviews with a main objective of:
2.1 Primary prevention of Ehlers-Danlos Syndromes (including: individual characteristics, risk behaviours and influences, public policy and educational interventions/programs; environment; nutrition; and vaccines);
2.2 Treatment and disease management in clinical, community or population settings (including: pharmaceuticals; biologics; gene/cell/tissue therapies; medical devices; surgery; physical agents – including radiotherapy, ultrasound, laser and phototherapy; physical, behavioural, and complementary therapies);
2.3 Researching the individual’s care (psychosocial impacts and economic consequences of disease, quality of life, management of pain and other symptoms, education), self-management (attitudes, beliefs and behaviours of health care providers; decision making; guidelines; education; and, work) of Ehlers-Danlos Syndromes and its outcomes;
2.4 Psychological, physical (PT/OT, exercise), lifestyle, coping (adaptations, accommodations) and complementary treatments, programs and interventions;
2.5 Investigating influences and implementation issues related to screening.
Theme III: Addressing gaps in EDS healthcare
3.1 Evaluating the organization, governance and delivery of Ehlers-Danlos Syndromes health care services, the impact of (local, regional and national) health policy and the economics of health care as well as studies into health care research design, measurement and methodologies.
