MICYRN News Spring 2017 | 9.2
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Congratulations Rarity Award Winner Anne Junker!
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(Anne Junker with Durhane Wong Rieger, President and CEO, CORD)
The Canadian Organization for Rare Diseases held their annual Rare Disease Day Awards Gala recognizing individuals and organizations that have made extraordinary contributions to the Canadian rare disease community on March 30th in Vancouver. MICYRN’s scientific director, Anne Junker, won the Scientific Leadership Award, which is presented to a distinguished researcher whose career represents a unique blend of scientific excellence and support of the patient community. A list of all the evening’s winners is available on the CORD website.
Dr. Junker also presented at the CORD conference earlier that day on a panel addressing the Vision for Canadian Rare Disease Networks. She explained the importance of networks in research and clinical trials, and highlighted MICYRN’s work in bringing pediatric research networks together in a formal affiliation.
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New Investigator Grants in Maternal, Reproductive, Child & Youth Health
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An operating grant funding opportunity announced in February to support new investigators in maternal, reproductive, child and youth health is a collaboration between seven CIHR institutes aiming to build research capacity. The program will fund research across the four pillars (biomedical, clinical, health systems services, and population health). Applicants need to be independent researchers, within 60 months of their first academic or research appointment, and have at least 50% protected time for research.
Registration Deadline April 18
Application Deadline May 23
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CCHCSP Developing Online Curriculum for Patients and Families
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The Canadian Child Health Clinician Scientist Program (CCHCSP) was successful in their funding application through the Ontario SPOR Unit to develop the online Patient-oriented Research Curriculum for Children, Families and Clinician Scientists in Child Health (PORCCH) program. It was the only child health specific proposal, and was developed with partners from the Ottawa Methods Unit, Holland Bloorview and SickKids. Modules will cover the following topics: research 101 for patients and families; steps to engaging patients in research in the full breadth of environments that Ontario patients and families experience; ethics for patient-oriented research; how to search for appropriate sources of research evidence, including key types of pre-appraised research evidence; and use of AMSTAR (A Measurement Tool to Assess Systematic Reviews) to assess the quality of a systematic review. The Vancouver Young Persons’ Research Advisory Group will be reviewing the first module of the online curriculum to provide input on youth engagement and accessibility.
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How Research Networks Are Improving Care
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It can be a challenge to provide highly specialised care for patients who have complex conditions, even more so when the prevalence of such conditions is low, as is the case for rare diseases. In March, the EU created 23 rare disease European Reference Networks (ERN) as legal entities. The ERNs are to serve as research and knowledge centers, and for the first time, provide the unique opportunity for clinicians to work across borders in Europe, treating patients from other Member States and ensuring the availability of subsequent treatment facilities where necessary. Many Canadian specialty networks align with the rare disease ERNs and leaders of several of these presented at the CORD conference at the end of March, raising awareness of the considerable impact our networks have made. Accreditation Canada International (now Health Standards Organization) has been contracted to implement the European Reference Networks and to continue to work on training, standards development, and evaluation.
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A Closer Look at
CHEO Research Institute
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Invaluable partnership with CHEO
Nestled in the heart of Canada’s capital city, the Children’s Hospital of Eastern Ontario (CHEO) is a community-backed organization that helps children, youth and families to be their healthiest. Underlying its high quality, family-centred approach to healthcare is an unwavering support from the hospital’s leadership and partner institutions alike for excellent research occurring across the organization. At CHEO, research makes an impact!
CHEO has a close partnership with the University of Ottawa, meaning almost all researchers are cross-appointed as faculty at the University. Many of their researchers are also physicians, nurses or health practitioners at CHEO and the Ottawa Children’s Treatment Centre (OCTC), who aim to solve the very problems they see in their day-to-day clinical work.
The CHEO Research Institute (RI) is comprised of three program areas, namely: Evidence to Practice (clinical research), Molecular Biomedicine (laboratory-based research), and Health Information Technologies (big data). Over 300 researchers and 60+ trainees are laser-focused on realizing the organization’s mission to conduct innovative research in a dynamic learning environment and translate that knowledge into practice and policies to improve the health of children, youth and their families.
The organization strives to make discoveries today for healthier kids tomorrow, perhaps best known for its internationally recognized leadership in the following research practice areas: Emergency Medicine, Healthy Active Living and Obesity, Genetics of Rare Disease, Bone Health, and Cancer.
Given its pediatric-focus and collaboration is one if its core values, it’s no surprise that CHEO has been a long-standing member of MICYRN and part of its many affiliated networks, including but not limited to:
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Canadian Alliance for Pediatric Rheumatology Investigators (CAPRI)
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Canadian Inherited Metabolic Disease Research Network
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Pediatric Emergency Research Canada
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Canadian Pediatric Surgery Network
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U.S. Pediatric Trials Network
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National Pre-term Birth Network
Also of note, many clinical trials at CHEO use the MICYRN-instance of REDCap, a secure web application for building and managing online surveys: yet another great example of CHEO’s leadership and our collaboration.
The CHEO RI website includes descriptions of current research happening across the hospital, and its newsroom, including a RSS feed, is worth bookmarking to keep up to date on their latest discoveries. Follow @CHEOhospital if you are interested in pursuing information on social media.
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“I couldn’t be prouder of those who conduct, support, or apply research at CHEO,” said Dr. Martin Osmond, CEO and Scientific Director of the CHEO RI. “Our invaluable partnership with MICYRN is indeed a catalyst! It helps to extend our reach, gives access to data platforms, and bottom-line it helps to advance science.”
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Record Numbers at the 2017 Canadian National Perinatal Research Meeting
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The annual Canadian National Perinatal Research Meeting (CNPRM), held in Quebec this past February, was the largest conference to date, achieving record numbers of registrants and trainees, which is evidence of Canada’s vibrant and growing perinatal research community. The country’s immense contribution to perinatal research and its role in the global effort of supporting and maintaining maternal and child health and policy continues to grow.
This year the conference had 384 registered delegates and 275 submitted abstracts (65 oral and 210 poster trainee presentations). In addition to three world-class international plenary speakers, new themes were added to the program, increasing the number of these concurrent sessions to 12. The meeting hosted two evening poster sessions, and this year for the first time, eight special interest workshop sessions were included with topics ranging from how to secure that first faculty position to neonatal feeding and improving neonatal care with the help of veteran parents. Also new this year was CNPRM’s collaboration with MICYRN, a conference gold sponsor. A judging tool that enabled real-time tallying of presentation scores was developed in REDCap with expert advice from the BCCHR Research Informatics team. A list of oral and poster winners is available on the CNPRM website. Conference organizers look forward to engaging with MICYRN for the support of the abstract review and presentation judging processes in future meetings.
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SmartMoms-Canada: A Smart App to Help Mothers-to-be with Health Goals
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Focusing on early intervention and upstream prevention of childhood obesity (i.e., pregnancy obesity management) the University of Ottawa's Dr. Kristi Adamo leads SmartMoms-Canada, a pregnancy-focused, app-based lifestyle modification program designed to provide women with personalized health information that will assist in staying within their gestational weight gain targets. MICYRN is providing engagement and communication support for the SmartMoms program. The Vancouver Young Persons' Research Advisory Group will be providing input into the utility of the app, which is in the final stages of development in both iOS and Android operating systems, and ready for focus group validation and testing.
For further information on the program, please contact Kevin Semeniuk at ksemeniu@uottawa.ca.
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