Research: Better together
CPBF is proud to have supported and collaborated in many research projects across Canada and worldwide, and our work is just beginning.
Research in neonatal care has led to remarkable advances in the care and lives of premature babies and their families. However, there are many more questions and more research to come.
As research advances, the medical community recognizes the vital role of parents and adults who were born preterm in shaping care for premature babies. Parents bring unique insights as constant figures in their babies' lives, offering firsthand knowledge that enhances research relevance.
The Canadian Premature Babies Foundation (CPBF) plays a pivotal role in advancing care for premature babies by collaborating with researchers. By fostering partnerships between families and the scientific community, CPBF ensures that parent's voices and insights guide research initiatives.
Watch our Executive Director share her personal experience participating and collaborating in research and why it matters for families like yours.
Parents of premature babies have a unique and invaluable perspective that can play an important role in advancing neonatal research. By participating in studies, joining research advisory boards, or sharing their experiences, parents can contribute to breakthroughs that improve care for future premature infants. Their involvement helps ensure that studies address real-world challenges and meet the needs of families in the NICU. Engaging in research also provides parents with a sense of purpose and empowerment, knowing their efforts may lead to innovations that save lives, enhance developmental outcomes, and reduce the long-term impact of prematurity. Together, researchers and parents can create a brighter future for the tiniest and most vulnerable patients.
1. Why Partner in research?
This video explores some reasons parents may want to get involved and discusses questions and feelings that may arise during the process.
2. Where do I fit in?
What is my role? In this video, hear about the many ways parents can contribute to research projects, there is probably more than you think!
3. What is the research cycle?
Learn about how research happens, and why each project is a little different.
4. Common research acronyms and terms.
If you are an NICU parent, you know how confusing short-forms and medical terms can be. In this video, get an overview of common words and abbreviations used in the research world.
Are you a researcher interested in collaborating?
We urge researchers to involve parents in their research projects. From the inception through design, implementation and dissemination, parents can support your research with their valuable experience and unique knowledge. CPBF supports a large community of parents and caregivers who have had premature babies. If you are a researcher who values patient and family- centred research and are looking for parents to participate in your project, we can help.
Our parent database, managed by REDCap electronic data capture tools and supported by the University of Alberta, has been designed to connect researchers like yourselves with parents ready to get involved.
The Global Foundation for the Care of Newborn Infants (GFCNI) outlines why involving parent representatives in research is vital and offers recommendations to make it happen. Their position paper, Involvement of parent representatives in neonatal research, is an excellent resource.
How to get in touch:
Please send your questions or timely requests using the request form. CPBF will get back to you to elaborate individualized strategy on supporting your project.
Current projects
We are proud to collaborate on a number of major research projects where the insights of parents and caregivers are invaluable. Some of our current collaborations include:
Our expectation regarding research collaborations
We’re excited to work together with co-applicants to achieve common research goals.
To make this happen, CPBF to expect from research collaborators:
• Timely requests
• Involvement in early stage in the research project development and during application process
• Participation in the project steering group
• Transparency in every stage of the process (sharing the final grant application before submission, invitation to meetings).
• Involvement in publication / communication and transparent mentioning of CPBF’s contribution
• Financial funding allocation to cover our involvement
For Parents
Are you a parent ready to learn more about how you can participate in research? We can help.
There are so many ways parents can be involved in research.
The possibilities are almost endless. Here are some common ways to get involved in research.
As a participant, you can:
-
Enroll you or your baby in a research study (your healthcare provider may know of studies that are a good fit, or a researcher may talk to you directly.
-
Answer surveys and questionnaires
As a collaborator, you can:
-
Work with researchers to come up with research questions and ideas
-
Be an advisor or partner in research projects
-
Review research protocols
-
Help by reviewing materials that share information with families
-
Be a co-author of research reports and publications
-
Share research information by presenting at conferences and workshops
Ready to get involved?
If you are ready to get involved in a research project, please fill out the form and CPBF will match you with projects of your interest.
Thank you to REDCap electronic data tools, generously hosted and supported by the University of Alberta, for helping us bring researchers and parents together.
*Rachel Martens is a parent with experience in the NICU after her son was born and also functions as a Knowledge Broker in child health related research. She believes that every partner in health research deserves to feel empowered and ready to bring their lived experience to the table.
Thanks to Gluckstein Lawyers for supporting the production of the research video series.