“One of the most common questions we get is, ‘What is my child going to be like when they’re older?’” says Dr. Ana Hanlon-Dearman, a professor of pediatrics and child health in the Max Rady College of Medicine who has 30 years of experience in developmental pediatrics.

“That’s difficult to answer, because there’s great diversity in how autism unfolds over time,” says Hanlon-Dearman, who is also medical director of the child development clinic at Specialized Services for Children and Youth – the clinic that receives all Manitoba referrals for autism assessment of preschoolers – and chief medical officer at the Rehabilitation Centre for Children.

“Children with autism can do better as they grow. They often learn new skills for communicating and self-regulating. They can grow from their school experiences and therapies. But that pathway of growth varies with individual children, and we don’t fully understand the factors that make that difference.”

Dr. Ana Hanlon-Dearman

On World Autism Awareness Day, April 2, Hanlon-Dearman was spreading the word that her team is seeking 150 families with a newly diagnosed autistic child to participate in the Pediatric Autism Research Cohort (PARC) study.

To enrol in the study, children must be younger than seven years old and must have received their autism diagnosis within the past 12 months. They can remain in the study until the age of eight.

The PARC project, led by researchers at McMaster University, is being conducted in multiple Canadian cities, with an overall aim to enrol 1,000 children.

The goal is to generate a wealth of data to understand the different developmental trajectories of children with autism and inform recommendations for autism resources and services, Hanlon-Dearman says. This is particularly important, she says, because the federal government is developing Canada’s first national autism strategy.

It’s also vital because the prevalence of the neurodevelopmental disorder is growing, she says, and scientists are still grappling with the multi-pronged mystery of what causes it.

“Twenty years ago, we would see about 40 Manitoba kids per year that we would refer to autism therapies,” Hanlon-Dearman says. “Last year, it was well over 600 children.

“That fits with what the Centers for Disease Control in the U.S. tells us: The prevalence in North America is now one in 36 children – so roughly one child in every classroom. The average age at which we diagnose Manitoba children is between two-and-a-half and four-and-a-half years old.”

The PARC study is innovative in its in-depth engagement with parents. At various intervals, parents will be asked to invest two to three hours in completing a number of online questionnaires on topics such as the child’s day-to-day functioning, behaviour, communication and social skills. They will also answer questionnaires about matters such as the child’s home environment and the services they are receiving.

Although it’s a significant commitment for parents, after each phase of questionnaires, the family will receive a report specific to their child. This will help them track how the child’s symptoms, skills and abilities are changing, and where the child may need additional help.

“Parents can use those reports to discuss with the school, or with therapists such as occupational or speech therapists, the child’s current strengths and areas that could use more support,” the professor says.

Hanlon-Dearman, a three-time UM alum who is also a researcher with the Children’s Hospital Research Institute of Manitoba, says there are waiting lists across Canada for autism services, and that needs improvement.

But it’s been very positive, she says, to observe how families now receive a child’s diagnosis in a more hopeful way than they once did.

“Twenty years ago, it was a devastating diagnosis to talk about with families. Now they recognize that there are other families who have children with autism. It’s much less difficult to talk about.

“Parents will often say to me, ‘I’m recognizing that there’s someone else in my family who might also have features of autism.’ That points to the genetics of the disorder, but everything we know about the genetics of autism still only accounts for a very small percentage of children with autism. That’s a story that is still evolving.”

To enrol in the PARC study, or for more information, contact Amina Butt, research assistant, at abutt@rccinc.ca

“This type of research is unique in that it engages patients in all aspects of study and ensures results are relevant to the priorities that they have identified,” said Pedersen. “By working together and investing in these networks, we are helping Manitoba’s research institutions create the innovative solutions needed to support patients across this province and beyond.”

Pedersen noted these four Strategy for Patient-Oriented Research (SPOR) projects connect researchers, health professionals, patients and policy makers across the country to improve the health of Canadians living with chronic diseases. The networks received a combined total of $10.1 million including $3.1 million in provincial funding through Research Manitoba, $6 million from the Canadian Institutes of Health Research and an additional $1 million from local research partners.

“We thank our funding partners for providing the support our researchers need to engage in the demanding clinical research these complicated matters require,” said Digvir Jayas, vice-president (research and international) and distinguished professor, University of Manitoba. “Today’s announcement means the University of Manitoba is even better positioned at the forefront of these crucial fields of inquiry. I would like to congratulate the scientists on their successful research programs to date and wish them all the best as they now delve deeper into these topics of great importance to so many of us.”

There is a strong University of Manitoba presence across SPOR networks and this latest significant long-term funding will enhance the university’s success in chronic disease research.

ABOUT THE NEWLY FUNDED SPOR RESEARCH PROGRAMS

Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects: the IMAGINE-SPOR chronic disease network

Principal Investigators: Drs. Charles Bernstein and Laura Targownik, Internal Medicine, Rady Faculty of Health Sciences

This network is a national collaboration of patients and scientists that will look at how gut bacteria and diet affect the course of inflammatory bowel disease and irritable bowel syndrome, and at the anxiety and depression associated with these disorders.

Listening, Learning, Leading: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD)

Principal Investigators: Drs. Allison Dart (Pediatrics & Child Health/Children’s Hospital Research Institute of Manitoba), Paul Komenda (Internal Medicine) and Navdeep Tangri (Internal Medicine), Rady Faculty of Health Sciences

This network will improve care for people with kidney disease. It aims to reduce the number of people who require dialysis or organ transplants, or who develop related illnesses that are debilitating or deadly.

CHILD-BRIGHT: Child Health Initiatives Limiting Disability – Brain Research Improving Growth and Health Trajectories

Principal Investigators: Drs. Kristy Wittmeier (Pediatrics & Child Health/Children’s Hospital Research Institute of Manitoba), Gina Rempel (Pediatrics & Child Health) and Ana Hanlon-Dearman (Pediatrics & Child Health/Children’s Hospital Research Institute of Manitoba), Rady Faculty of Health Sciences

This network will achieve brighter futures for children with brain-based developmental disabilities and their families by creating novel interventions to optimize development, promote healthy outcomes, and deliver responsive and supportive services across the life-course.

SPOR Network in Diabetes and its Related Complications

Principal Investigators: Drs. Paul Fernyhough (Pharmacology & Therapeutics/St. Boniface Albrechtsen Research Centre) and Jon McGavock (Pediatric & Child Health/Children’s Hospital Research Institute of Manitoba), Rady Faculty of Health Sciences

This network will transform the health outcomes of people with diabetes and its related complications. It will facilitate important and meaningful connections between patients, their primary healthcare providers, and specialists to achieve improved health care and significant cost savings within the health system.