PARC Project - FAQs

Autism Care

Research
Education
Community
Policy

Research

“Future research needs to focus not only on the biological markers of ASD but also include data about functioning, participation, and environmental barriers and facilitators.”

Dr. Olaf Kraus de Camargo  //  Developmental Pediatrician

 

MacART is laying the foundation for creating a systematic way of linking scientific research on Autism Spectrum Disorder (ASD) at McMaster University to clinical practice at McMaster Children’s Hospital.

The physical proximity of McMaster Children’s Hospital, Hamilton Health Sciences, and McMaster University has a number of characteristics that provides the rare opportunity for collaborative research. Taking advantage of existing university and clinical infrastructure and cross-appointments for clinicians at the university, ASD experts from these organizations are coming together to integrate ASD research into clinical practice.

The focus of MacART members’ research is in the areas of basic science, clinical practice, clinical research, epidemiology and statistical modelling, knowledge translation and exchange, and social science research. By promoting the collaboration of stakeholders across disciplines, MacART is reducing barriers to implementing research in clinical practice, with the goal of advancing autism care through meaningful research.

Learn more about our research HERE.

Education

MacART members are now supervising more than 50 research trainees at the undergraduate, graduate, and postgraduate levels, and are engaged in the mentoring of junior and intermediate faculty members.

In the future, we intend to establish research and clinical training programs for students in McMaster’s undergraduate medical, health sciences, and psychology programs, and for residents and fellows in Pediatrics and Psychiatry.

By training and mentoring emerging researchers and practitioners, we will help to solidify their understanding of and commitment to using basic science to inform their clinical practice, and to use their clinical experience to help formulate research questions. It is our belief that involving these learners in MacART educational activities will promote their use of practices that advance autism care through meaningful research.

Community

“Our scientists are working collaboratively with local clinicians to generate the evidence needed to improve autism services. This symposium is a great example of McMaster’s community engagement efforts.”

Dr. Patrick Deane // President & Vice-Chancellor // McMaster University

 

The community engagement component of MacART strives to work with stakeholders and involve them as partners in every step of the research process.  By doing so, the questions that drive research begin to change. They become more meaningful because they address the real day-to-day challenges faced by children and their families, and the clinicians supporting them.

MacART aims to increase participation and involvement of members of the McMaster and Hamilton communities in the research process. With community members driving the research, new and relevant knowledge can be produced to bridge the research-to-practice gap in ASD and advance autism care through meaningful research.

Policy

“People whose lives are connected to the challenge of autism can share knowledge – from clinicians to educators to parents – and what an amazing opportunity that is. We have a real opportunity to translate challenges into research, and research into practice that will help families living with autism.”

Rob MacIsaac  //  President & CEO // Hamilton Health Sciences

 

Policies should be created using the best available evidence that make positive impacts on the lives of individuals with ASD, along with their families.

MacART’s founder, Stelios Georgiades, serves on both federal and provincial advisory committees about ASD treatment funding.  Along with the wide-ranging expertise of its many ASD experts, MacART is set to act as a highly credible source of evidence-based information to influence and inform public policy about the provision and funding of ASD diagnosis, treatment, and family supports.

MacART will continue to find ways to collaborate with policymakers to both learn more about the policymaking process, and to contribute our expertise and knowledge to inform policymaking, in order to advance autism care through meaningful research.

Pediatric Autism Research Collaborative (PARC) Project - Frequently Asked Questions (FAQs)

Information on:

 

Taking Part:

1Who can participate in PARC?

We are working together with clinicians at the Ron Joyce Children’s Health Centre to develop a Research Protocol that will be embedded into the Autism Spectrum Disorder (ASD) Service Program. Right now there is a lot of information collected from families in ASD Service, but there is no process in place that allows research to be done in a systematic way that can then inform the treatment children receive at the clinic. Through this protocol we hope to improve our understanding of ASD, as well as improve the individual treatment and clinical care that children receive at ASD Service. 

 

2. What is the time commitment to participate in this project?

We want to minimize burden on families. Stage 1 asks permission to access data already being collected at the ASD Service at the Ron Joyce Children’s Health Centre during your child’s visits, so families can provide information with no additional time or effort required.

Stages 2 and 3 are optional, and can be completed at a family’s convenience. Stage 2 involves completing an additional set of questionnaires to provide information on issues like social factors and family experiences. Stage 2 questionnaires take approximately 2 hours to complete altogether, and will be repeated every 6 months. However, they do not have to be completed all at once and we are exploring ways to make it easy to answer these questionnaires (like over the phone or online).

Stage 3 will introduce families to other studies that they may participate in. These studies each involve different time commitments, which will be described when parents are approached about these studies.

 

3. How long will my child be in the project?

The PARC project will regularly collect participant information over a 2-year period as we test this research process. The goal is to eventually develop a research protocol that follows children during the entire time period they receive services from the Ron Joyce Children’s Health Centre. You are able to withdraw from the project at any point.

 

4.   Why should my child participate in this project? What are the benefits involved?

By taking part, your family will be helping us develop a research protocol that will put the information gathered at ASD Service to better use. Not only will it help to inform your child’s individual care and treatment plan, this research can also help us better understand how to support children and families with ASD. As a token of our appreciation for your time, each time you complete the extra Stage 2 questionnaires your family will receive a $20 gift card for a retailer of your choice.

 

5.  Are there risks involved with participating in this project?

The risks associated with any research project typically relate to information confidentiality. We have taken a range of safety mechanisms to protect your information and privacy. Another possible risk is that people might feel uncomfortable with some questions. However, participants are free to skip over any questions they don't feel comfortable with. Participants may also feel bored or frustrated with some questions, but they have the ability to complete questionnaires at their convenience, and can have the support of the research team to help them.

 

6. How will my child’s information be used?

Your child’s information will be added to a central project database so that it can be analyzed and interpreted to inform the clinical services your child is receiving. When this information is combined with information from other participants, we can use this group data to learn more about children and families with ASD.

 

7. How long will it take to see results from the project?

The information collected from each participating child and family will be integrated into our database and analyzed on an ongoing basis to inform the clinical services they are receiving. We plan on developing a report and hosting family days to share results with families.  

 

Privacy and Confidentiality:

1.  Is all the information confidential? What safeguards are in place to protect our information?

All the information collected in the project will remain confidential. Data access will only be granted to authorized project personnel.  Names of participants and individuals involved will not be revealed. Participants will be assigned an identification number that will be used instead of names when collecting, storing, and reporting participant information. Your information is stored in ways that comply with the hospital’s security requirements. 

 

Consent and Withdrawal:

1.     Does my child have to participate?

No, children are not required to participate in the project. If you do not want to take part this will not affect the care your child receives from the Ron Joyce Children’s Health Centre.

 

2.     What if I change my mind about participating in this project?

Study participants may contact the project team at any point if they wish to withdraw for any reason. Participants will be given the option to stop future participation but leave collected data in the database, or retrospectively delete their data. The only exception will be if the data has already been used for analysis where it cannot be removed.