Online Patient Engagement Workshop – January 30, 2023
The Canadian Institutes of Health Research Institute of Genetics (CIHR-IG) held a workshop to hear from patients and caregivers with lived experience of genetic conditions to inform IG’s plans to establish a structure to engage a greater diversity of patients and caregivers on a more regular basis. CIHR-IG is working to build approaches, systems and structures that support meaningful engagement with a diversity of patients and caregivers.
IRDiRC Canadian Satellite Meeting: National Coordination for Rare Diseases – October 4, 2023; Montréal, Canada
The event brought together key collaborators, funders, decision makers, patient representatives, and international groups to have an open dialogue regarding current and future areas of focus within the rare disease space. The goal of the event was to achieve better alignment of, and continued communication between, various efforts that pertain to rare diseases in Canada.
New Principal Investigators (“New PI”) Meeting – October 11-13, 2023; Halifax, Nova Scotia
CIHR Institute of Genetics (CIHR-IG) and CIHR Institute of Nutrition, Metabolism and Diabetes (CIHR-INMD) co-hosted the 19th New Principal Investigators Meeting (October 11 – 13, 2023 in Halifax, NS). The in-person mentorship and networking event was designed to strengthen the professional development of early career researchers (ECRs) working within the mandates of the CIHR-IG and CIHR-INMD.
Fifth seven researchers from across the country attended the meeting and gained more insights into CIHR’s organizational structure and activities, patient partnership, knowledge mobilization, successful research program management, career planning within the context of their whole lives, indigenous health research, grant writing, and participated in a mock peer review exercise.
Social Mixer for Canadians and colleagues attending the 2023 American Society of Human Genetics (ASHG) Conference – November 1, 2023; Washington, D.C.
CIHR-IG and SickKids hosted a Social Mixer event for Canadian genetics experts attending the ASHG conference in Washington, D.C.
The social gathering event was organized for Canadians and colleagues attending the ASHG conference to welcome our Canadian community of genetics experts to discuss all things genetics, reconnect with colleagues and build new and collaborative relationships.
Raising the Volume on Research Ethics: Moving from Conversation to Collective Impact (Canadian Association of Research Ethics Boards - CAREB Genomic Consent Session) – April 20-22, 2022; Virtual Conference
The main components of the core elements of participant consent for human genomic research were presented, discussed, and validated during this session. Subsequently, these elements were published on the National Library of Medicine website.
Social Mixer for Canadians and colleagues attending the 2022 American Society of Human Genetics (ASHG) Conference – October 26, 2022; Los Angeles, CA
The CIHR Institute of Genetics and The Hospital for Sick Children (SickKids) Research Institute hosted a social mixer for Canadians and colleagues attending ASHG in Los Angeles, in 2022. This event provided an opportunity for networking and building collaborative relationships.
18th annual New Principal Investigators Meeting – November 2-4, 2022; Halifax, Nova Scotia
Dr. Christopher McMaster, Scientific Director of CIHR- Institute of Genetics (CIHR-IG), and Dr. Fei-Fei Liu Scientific Director of CIHR- Institute of Cancer Research (CIHR-ICR) hosted the 18th annual New Principal Investigators Meeting. The meeting was intended for the junior faculty members, clinicians and scientists in genetics, cancer research, biochemistry, cell biology, and other health research disciplines.
Fifty junior researchers and clinicians from across the country met to engage with their peers and with leading scientists from a variety of disciplines. The program spanned over three days and was designed to support the career development of Canada’s New Principal Investigators.
AEG2C Symposium – Hybrid Event – Online and McGill University, Montreal, Quebec (Canada); November 9-10, 2022
The “Advancing Equity in Genetics and Genomics in Canada” was an international symposium on Equity, Diversity and Inclusion (EDI) in Genomics. By convening diverse stakeholders, including researchers, clinicians, community members, research funders, knowledge users, representative of the industry, this international two-day symposium highlighted the importance and value of inclusion and diversity in genomics to advance our understanding of the mechanisms of diseases and to promote health equity.
Second Canada-UK Clinical and Genomic Data Sharing for Research – February 16-18, 2021; virtual meeting
The second workshop on Clinical and Genomic Data Sharing for Research aimed to define best practices for a clinical and research genomic library, maximize the value of genomic diversity and inclusion, build a value proposition based on open-science approaches, draw lessons from the COVID-19 pandemic focusing on genomic and biobanking efforts, and identify opportunities for the future of research and genomic medicine.
Dialogue to coordinate Canadian efforts towards affordable and accessible gene therapies – October 08, 2021; virtual meeting
The dialogue aimed to define a coordinated approach in the context of gene therapies in Canada. This coordinated approach focused on maximizing collective investments and efforts, ultimately contributing to the development of affordable and accessible gene therapies for the health and economic benefit of patients and all Canadians. Key attendees included representatives from Genome Canada, CIHR-IG, Health Canada, the National Research Council, Stem Cell Network, and Innovation, Science and Economic Development.
Indirect Socio-Economic Burden of Inherited Diseases (ISEBID) Networking and Strengthening Workshop – October 22, 2021; virtual meeting
The workshop provided an opportunity for the three successful ISEBID Team Grant recipients to present their proposals, fostering a collaborative environment while emphasizing networking, partnership strengthening, and alignment with our open science policy.
Optimizing the Use of Real-World Evidence (RWE) as part of Decision-Making for Drugs for Rare Diseases – October 2021; virtual meeting
In October 2021, the Canadian Institutes of Health Research (CIHR), Canadian Agency for Drugs and Technologies in Health (CADTH), the Canadian Organization for Rare Disorders (CORD), and Health Canada collaborated to host a 2-day best brain exchange (BBE) to promote and coordinate discussions about the optimal integration of RWE for decision-making about drugs for rare diseases. The event was chaired by Christopher McMaster, Scientific Director, CIHR Institute of Genetics. The BBE brought together 137 invited participants from across Canada with a cross-section of different types of health system stakeholders, including people with lived experience, their care providers, key stakeholders involved in decision-making about drugs for rare diseases in the Canadian health system, and academics.
The full Meeting Report is available here: Report on a Best Brains Exchange Optimizing the Use of Real-World Evidence as Part of Decision-Making for Drugs for Rare Diseases [ PDF (731 KB) - external link ]
Improving Access to Pediatric Medications in Canada Workshop – February 06, 2020; Montreal, Quebec
This event was hosted at CHU Sainte-Justine with the goal of addressing and improving access to Pediatric Medications in Canada. Distinguished guests representing various organizations from across Canada attended the workshop, including Health Canada, CIHR (IG and IHDCYH), University of Western Ontario, Novartis, CADTH, MICYRN - KidsCAN Trials, Children's Hospital Research Institute of Manitoba, Children's Healthcare Canada, Canadian Paediatric Society, Paediatric Chairs of Canada, BIOTECanada, Canadian Pharmacists Association, PDCI Market Access, Valeo Pharma, Pharmascience, Sandoz Canada, C17 Council, and CHEO.
Socioeconomic Burden of Inherited Disease Workshop – March 21, 2019; Ottawa, ON.
The workshop was centred on discussing the socioeconomic burden of inherited diseases within the Canadian health care system, with a particular focus on understanding costs, including those affecting families and communities through factors such as workforce disruption and informal caregiving, the knowledge gaps in this area, and identifying the best approaches to fill these gaps. The overarching objective was to engage in in-depth discussions that would guide efforts toward delivering equitable health care to both individuals and larger populations.
RE(ACT) Congress – Sheraton Centre, Toronto, Ontario (Canada); May 8-11, 2019
The RE(ACT) Congress – International Congress on Research of Rare and Orphan Diseases – was initiated in 2012 by the BLACKSWAN Foundation. The Congress aimed to bring together scientific leaders, experts, and young scientists from a variety of fields to present cutting-edge research and exchange ideas. Patients and patient organizations committed to research shared their experiences and perspectives.
8th Annual Canadian Human and Statistical Genetics Meeting (CHSGM) / GE3LS ConferenceFootnote * – June 16-19, 2019; Fairmont le Chateau Montebello, Quebec
The CHSGM held in collaboration with the Canadian GE3LSFootnote * and Health Services Policy Research Conference was designed to address the current priorities of both the human and statistical genetics communities in Canada. The program included a special focus on patient engagement, whole genome analysis and multi-omics approaches as well as genetics, diabetes and cardiogenomics. On the statistical part, the program focused on population genetics and study design and analysis.
Social Mixer for Canadians and colleagues attending the 2019 American Society of Human Genetics (ASHG) Conference – October 18, 2019; Houston, TX
The CIHR Institute of Genetics hosted a social mixer for Canadians and colleagues attending ASHG in Houston, in 2019. This event provided an opportunity for networking and building collaborative relationships.
Canada-UK Clinical and Genomic Data Sharing for Research workshop – November 25 and 26, 2019; Ottawa, Canada
The workshop was held to explore how to maximize the use of available clinical data through increased partnerships between Canada and the UK. The main goals of the workshop were to identify the existing clinical data infrastructure, repositories, and projects accessible for research in Canada and the UK, define options available to researchers to access and maximize the use of clinical data in a research context; achieve a common understanding of the current knowledge and methodological gaps in this area; and define the scope and required components of a joint transnational funding call addressing these gaps.
7th Annual Canadian and Human Statistical Genetics Meeting – June 10-13, 2018; Harrison Hot Spring Resort, BC
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