CANUE, which is partnering with some of the largest health and cohort databases in Canada and was supported by MICYRN in its grant application, held a workshop with over 100 attendees for its various research arms in early December.
The Vancouver young persons’ research advisory group, KidsCan, had the opportunity to present at one of BCCHR’s recent mini-med school courses in November. Since 2003, nominated high school students attend these highly successful evenings, which are designed to give a basic understanding of various research fields, while exploring up-to-the-minute basic science research, clinical applications and social and ethical implications related to that field.
The KidsCan team presented on the projects they are involved in and how students can take part as new members of the team. As a result, they received applications from 47 potential new advisors for upcoming projects, including Child-Bright, the Chronic Kidney Disease network, and a diabetes group. Over the winter break, KidsCan advisors worked with the Child-Bright and Cansolve education program leads to provide input on CIHR modules designed to train patient/public research advisors.
HICCUP – Engaging Healthy Families to Help Others
The Healthy Infants and Children’s Clinical Research Program (HICCUP) is developing a registry of healthy children and parents in Alberta who are willing to take part in pediatric health studies. Healthy controls play an important role in health research and the discovery of the causes and treatment of childhood illnesses. The program will provide researchers and investigators with ready, systematic access to healthy controls for their studies. Families who participate can take pride in knowing that they have positively contributed to child and community health in Alberta.
HICCUP is a collaboration between the Women and Children's Health Research Institute (WCHRI), Stollery Children's Hospital Foundation and University of Calgary's Department of Pediatrics.
Learn more about how to get involved!
Streamlining Permission to Contact Improves Researcher Access
The BCCH Biobank Secret Superhero Campaign launched a year ago and since then has significantly increased patient and family awareness of biobanks and how their participation can help research. In addition to fostering awareness, BCCH implemented the Permission to Contact (PTC) Protocol, designed by Peter Watson (UBC) to help remove obstacles to patient consent and enrollment. The single form asks patients if they would like to be contacted for future research opportunities as part of the routine health clinic practice. The Protocol, which led to several publications, will soon be used through the BC Support Unit.
Also recently, Dr. Vercauteren, Director of the BioBank, received a CIHR grant with other distinguished investigators for the study “Filling the void: Public engagement around a new model for access to research resources”. This work will help further facilitate research engagement.
MICYRN developed an online abstract submission and review process to support the approximately 200 abstracts that will be received from 12 research program themes. In addition to the process, MICYRN is supporting the meeting logistics of the theme committees to review and rank abstracts; the top four trainee abstracts from each theme will be invited to present at the meeting and the remainder will be awarded a poster presentation. MICYRN is also developing a web-based poster judging process to enable real-time judging and subsequent tallying for awards at the event. The coordinating centre is providing additional communications and awareness of the event and a call for abstracts through social media, print and web.
There will also be an opportunity for discipline-specific sub-groups to break out and share the latest developments in their respective fields. For more information, please visit the meeting website.
Enhancing the Capacity for Collaborative and Cross-disciplinary Research
The Research Advancement through Cohort Cataloguing and Harmonization (ReACH) initiative has made swift headway after receiving a CIHR Operating Grant for the Canadian DoHaD Cohort Registry earlier this year. The registry is starting with 28 of over 48 known Canadian pregnancy and birth cohorts with more than 18,000 participants. In its web-based catalogue, investigators can access data on socio-demographic characteristics, lifestyle behaviours, diseases, symptoms and signs, medication, interventions, reproduction, birth, and other measures. Dr. Isabel Fortier (Research Institute of the McGill University Health Centre) is lead PI for the initiative. For more information, please visit their website.
Submission of Pan-Canadian Preterm Birth Network Team Grant
A team of 80 co-applicants and 15 collaborators, 26 partner organizations and over 30 supporting institutes, led out of Sunnybrook Research institute by Drs. Prakesh Shah, Jon Barrett, and Kate Robson, came together to submit an application to CIHR for a Pan-Canadian Collaborative Preterm Birth Network. If successful, this integrated maternal-newborn and infant network for preterm neonates will deliver a robust platform of existing and new collaborations to perform world-class research.
This submission is a reflection of where research is headed today, with fourteen principal applicants – Prakesh Shah, Sarah McDonald, Karel O’Brien, Jean-Charles Pasquier, Jon Barrett, Nils Chaillet, KS Joseph, Thierry Lacaze-Masmonteil, Sandesh Shivananda, Bruno Piedboeuf, Anne Synnes, Jonathan Foster, Kate Robson, Petros Pechlivanoglou – and a team of investigators located across provinces and fields of expertise, no longer working in silos but coming together to advance discovery through shared knowledge.
In this newsletter we take a closer look at the Department of Pediatrics at Queen’s University, which has been a member of MICYRN since the network’s inception. It is a small department of 21 clinical faculty members and, as member representative Dr. Michael Flavin shared in discussion, is currently focused on competency-based medical education and neurodevelopment. The department generates a significant amount of prominent research, and is innovative in several areas of great interest to the pediatric and maternal research community today, including data sharing, integrating knowledge into clinical settings, and cross-discipline and network collaboration.
As a highly collaborative department, pediatric investigators have multiple links with Queen’s basic sciences faculty in its research into developmental origins of health and disease (DOHaD), an area in which they are also co-applicants on funding proposals. Queen’s basic scientists work directly with the child development clinic in recruiting and evaluation patients with FASD and CP in respective CP-NET and NeuroDevNet collaborations. In terms of acquired brain injury risk, the department has committed significant efforts to OCHSU initiatives in concussion prevention, with several recent relevant publications.
Many funded projects are taking place on integrating knowledge into clinic settings. These include evaluation of the antimicrobial stewardship program in the NICU; process evaluation for implementation of universal poverty screening in pediatric clinic and in-patient settings; integrating performance evaluation into the process of asthma care in the clinic setting; and integrating genetics literacy and appropriate referral into primary care practice as it relates to the exponential knowledge increase in this area.
Through research networking Dr. Kim Dow has led several collaborative studies using CNN data to evaluate and improve newborn care. The neonatal division is also part of the multicentre CIHR-funded Maternal-Infant Care project which focuses on evidence-based practice to improve neonatal outcomes (EPIQ). The department is also collaborating with the Children’s Hospital Research Institute of Manitoba (CHRIM) and utilizing their data repository. For example, a current study funded by CHRIM explores the role of inter-pregnancy interval on preterm birth risk with a plan to extend this study to a sibling control study using the Ontario ICES database. Department members have ongoing collaborations with provincial and national networks including the Pediatric Oncology Group of Ontario (POGO), Pediatric Emergency Research Canada (PERC), Pediatric Investigators Collaborative Network on Infections in Canada (PICNIC), Canadian Paediatric Surveillance Program (CPSP), Children’s Oncology Group (COG) in the U.S., as well as individual disease research agencies.
In neurodevelopment research, Dr. Jagdeep Walia is a leader in the development of gene therapy for GM2 gangliosidoses using animal models of this fatal neurodegenerative disease. Department members also use large database-derived inquiries to explore pregnancy and perinatal risk factors for a range of neurodevelopmental impairments including cerebral palsy and autism.
Two studies partnering with MICYRN this year – Research Advancement through Cohort Cataloguing and Harmonization (ReACH) and Improving Outcomes for Preterm Infants and their Families: A Canadian Collaborative Network – include Queen’s investigators Graeme Smith and Maria Velez respectively. Please visit the Department of Pediatrics website for information on their clinical programs.
KidsCan, the Vancouver-based young persons’ advisory group (YPAG) and currently the only research YPAG in Canada, has had a very busy year presenting at conferences that include the International Children’s Advisory Network (iCAN) Summit in Barcelona and the Paediatric Academic Society Meeting in Baltimore (May) and the International Congress of Pediatrics in Vancouver (August).
Team members assisted in organizing the Barcelona Summit, where they worked in close partnership with iCAN advising on international pediatric research and projects with 17 other teams from around the world. At the end of the summit the group received the Most Friendly Team award. At the 2016 Paediatric Academic Society Meeting, lead advisor, Vivian Tsang, and advisor Siaw Yee Chew were exhibitors for the iCAN booth and distributed surveys to researchers and clinicians about their opinions on medical marijuana in collaboration with the University of Connecticut and iCAN. Vivian also authored an abstract on how YPAGs can improve medical care for pediatric patients, which was used for a poster presentation.
KidsCan continues to provide feedback on national studies, most recently with its involvement in the “Impact of Transitioning to Secondary Schools on Health Behaviours” study, as well as a partnership with the BC Children’s Hospital Allergy Clinic in the development of a food allergies mobile app. For the transitioning study the team reviewed interview scripts, proposals, consent, assent, and school presentation materials and discussed with the project coordinator on how language and delivery could be made more relatable to the participant demographic during the recruitment process. With the Allergy Clinic, advisors reviewed questionnaires that will be presented to youth focus groups at high schools and the BC Children’s Hospital, and also participated in the recruitment process.
IHDCYH is launching a unique funding opportunity, IHDCYH Talks” competition, to invite researchers to produce a short video to share their research and ideas in the area of reproductive, child and youth health.
Evaluation of Consumer Involvement (CI) in the MCRN
The National Institute of Child Health and Human Development has called for a Request for Information for the development of a placental atlas tool, an internet resource for placental research that can be freely accessible to all interested researchers.
Grand Challenges Canada, funded by the Government of Canada, announced $2.4 million in grants for 22 bold ideas to address the challenge of saving and improving the lives of mothers, newborns and children.
MICYRN wrote a letter in support of a successful CIHR Planning Grant, entitled “Long-term Cardio-Respiratory Outcomes of Extremely Pre-term: A Workshop to Guide Development of a Current Canadian Study” (PI, S. Katz, CHEO).
Congratulations to Alan Bocking, Professor in the Departments of Obstetrics and Gynaecology and Physiology at the University of Toronto and Associate Scientist at the Lunenfeld-Tanenbaum Research Institute, Mount Sinai Hospital, who was recently elected Vice Chair of the MICYRN Board of Directors for a two-year term.
Council of Canadian Academies Releases Its 2013/14 Annual Report. This year's report, entitled Evidence First, illustrates their progress in achieving an ambitious, aspirational vision -- to be a trusted voice for science in the public interest.
A new document published by the Canadian Paediatric Society, entitled Health research involving First Nations, Inuit and Métis children and their communities, summarizes ethical and practical considerations for health research involving Aboriginal children and youth.
The Placental Research Network has put out a final call for completion of its survey on the research interests of placental scientists around the world and to identify available bio-specimens. The survey is for scientists who operate a biobank and/or have bio-specimens they would consider sharing.
KidsCan is a youth research engagement initiative that directly involve youths as advisors and partners in the research and development of innovative mobile-based solutions to the health challenges they face. More information is provided here in this KidsCan article
MICYRN is now listed on Orphanet and working with the CIHR Institute of Genetics to provide content about rare disease resources available in Canada.
MICYRN provided letters in support of two successful CIHR Planning Grant submissions “SPIRIT-C” in the Priority Announcement Funding Opportunities for Ethics and Partnerships for Health System Improvement (PIs, M. Offringa, A Chan, D. Moher, T. Klassen, W. Chan, and K. Abdullah, Sick Kids), and “Standards for Research in Child Health: Collaborating to advance methodological research in child health” (PIs, M. Offringa, D. Moher, T. Klassen, and W. Chan, Sick Kids)
USA- Eunice Kennedy Shriver National Institute of Child Health and Human Development Pediatric Clinical Trials Network.
MICYRN’s Ethics Group has reviewed and found acceptable the Protocol for Pharmical Kinetics of Under Study Drugs in Children, which will open study sites at Ste-Justine, CHEO, Sick Kids, and MICH as part of the USA- Eunice Kennedy Shriver National Institute of Child Health and Human Development Pediatric Clinical Trials Network.
European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA).
MICYRN marks its third year as a member of the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA)
The Licit and Illicit Drug Use during Pregnancy report was released as part of CCSA’s Substance Abuse in Canada (SAIC) research series during the biennial Issues of Substance (IOS) 2013 conference.
CIHR President Alain Beaudet invited MICYRN Board Chair Aubrey Tingle to Saudi Arabia to provide advice on research development. Apr 2014
Maternal Infant Child & Youth Research Network
MICYRN’s Ethics Group has reviewed and found acceptable a Permission To Contact (PTC) protocol which enables a greater number and diversity of our clinic patients to be provided the opportunity to be involved in research. April 2014