Kayla Baayens has gone from being bed ridden to being a typical kid without pain.
Baayens family
May 28, 2017
$8 million in grants brings precision medicine to children suffering from arthritis
International team including researchers at Alberta Children’s Hospital Research Institute takes key role in project
Dr. Susanne Benseler leads Kayla Baayens in mobility tests. The 10-year-old has an aggressive form o
More than 20,000 children suffer from childhood arthritis in Canada; Kayla Baayens is one of them. The 10-year-old from Red Deer, Alta. has an aggressive form of the disease. It progressed to the point that her neck was stuck at a 15-degree turn. Unable to lie down comfortably in bed or brush her own teeth due to joint inflammation, Kayla and her family were desperate to find a treatment.
Kayla, pictured above withDr. Susanne Benseler, was referred to the Alberta Children’s Hospital. With a team of clinician researchers, Kayla received a diagnostic evaluation based on her own biological profile. “From a blood sample, we were able to examine Kayla’s biomarkers to identify her specific biological subtype of disease and choose the best method of treatment,” says Benseler, a rheumatologist and professor in theat theand member ofand the
Thanks to the precise diagnosis and targeted drug program, Kayla has gone from being bed ridden to being a typical kid without pain. “Compared to where she was, it’s like night and day,” says her father, Dean Baayens. “Kayla has even ridden a bike for the first time in her life!”
Stories like Kayla’s are rare. Most children with arthritis don’t have access to precision medicine diagnostics and targeted treatment. They are placed in conventional care involving a trial-and-error drug treatment plan with no specific biologic guidance on which therapy to choose and when to safely stop therapy.
The importance of diagnosing and treating early
Childhood arthritis is an inflammatory disorder. There is a narrow window of opportunity to treat affected children before their joints are irreversibly damaged by the disease. “We’re incredibly thankful to the Alberta Children’s Hospital and Dr. Benseler,” says Dean Baayens. “Arthritis is not an easy thing to deal with; it’s a horrible thing for a parent to see their child go through. We’re incredibly thankful to the people who worked to develop these methods to treat Kayla appropriately.”
$8 million in grants to further the research
Now an international research network working to provide the precision medicine approach that Kayla experienced is getting a huge boost. The network, called Understanding Childhood Arthritis Network, or UCAN, is receiving a total of $8 million in research funds from theand corresponding organizations in the Netherlands.
“We will use the investment to develop novel tests of specific immune and genetic markers and to determine individualized therapy for children living with arthritis in an attempt to treat children more rapidly, efficiently and with fewer side effects,” says Benseler, a co-principal investigator.Benselerand Rae Yeung, rheumatologist and senior scientist at The Hospital for Sick Children, will lead the Canadian arm of the study.
Already, researchers have discovered five distinct subtypes of the disease, which activate particular proteins in the body that can be detected through an inexpensive biomarker kit. Benseler believes finding more subtypes will ultimately improve the care and quality of life for children with arthritis.
In brief, the funding will provide:
- a diagnosis determined by the biology of their disease for children in Canada and the Netherlands
- a protocol for treatment that is accessible to clinicians and families in these countries
- intensive research to find the inflammatory pathways that cause childhood arthritis
Large UCalgary interdisciplinary team involved
The team members on this grant include an interdisciplinary group of researchers from the Cumming School of Medicine and the joint pediatric and adult care team of the Division of Rheumatology in the Department of Paediatrics.
- Marvin Fritzler, MD, PhD, is a professor in the departments ofand, and director of Mitogen Precision Diagnostics. His research team will provide the identification of specific biological subtypes of the disease.
- Deborah Marshall, PhD, is a professor in the departments ofand Medicine, Canada Research Chair in Health Services and Systems Research, Arthur J.E. Child Chair of Rheumatology Outcomes Research, and member of the, theand the Alberta Bone and Joint Health Institute. She is the Canadian health economic leader of the project and will measure the economic impact of precision medicine for childhood arthritis and develop mathematical models that will guide other countries.
- Paul Kubes, PhD, is the director of theand a professor in the departments of, medicine,, and. He is also a member of theand holds a Canada Research Chair in Leukocyte Recruitment in Inflammatory Disease.
- Marinka Twilt, MD, PhD, is an assistant professor in the Department of Paediatrics, a rheumatologist and clinician scientist and member of the Alberta Children’s Hospital Research Institute. She is the nominated Canadian Young Investigator on the project.
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