Participez à la recherche

Project Title: 
Evaluation of a JIA Decision Aid to Improve the Collaborative Decision-Making Process Between Patients, Families, and Clinical Care Teams

Research Team:
Antonia Barbaric (PhD Candidate) and Dr. Joseph Cafazzo

Research Host Institution: 
University of Toronto

Background:
JIA often requires trial and error to find effective treatments, which can be physically and emotionally challenging when patient and family preferences aren’t fully considered. Our decision aid bridges this gap by capturing your priorities and aligning them with current guidelines to present clear, personalized treatment options.

Purpose:
Our research is focused on improving collaboration in the decision-making process for selecting JIA treatments. We are creating a decision aid tool to help with this process and are looking for your feedback!

Eligibility Criteria: 
You may be eligible to participate if you:

• Have been diagnosed with JIA
• Are between 10 to 25 years of age
• Have been prescribed at least one JIA medication

Participation Details:
Your role will involve:

• Participating in an online interview on Zoom (30-45 minutes)
• Filling out a demographic questionnaire (5 minutes), and
• Filling out two surveys to help share your thoughts about the decision aid (5-10 minutes)

Participants will receive a $25 gift card.

Risks & Confidentiality: 
Discussing your JIA management may cause emotional discomfort. Participants will be reminded that they do not need to share anything they are not comfortable with and that all information will be anonymized and securely stored.

Recruitment Start Date: July 4, 2025
Recruitment End Date: October 31, 2025

Contact Details: 
To participate, please contact Antonia, the study coordinator, by emailing: [email protected] to discuss next steps. If you have any questions about your rights as a participant, please contact the Research Oversight and Compliance Office – Human Research Ethics Program: [email protected] or (416) 946-3273.

Titre du projet : 
La santé mentale des personnes atteintes de maladies rhumatismales auto-immunes (MRA) pendant la transition vers la parentalité : une étude à méthodes mixtes visant à identifier les facteurs associés et les besoins de soutien

Équipe de recherche : 
Dre Deborah Da Costa (chercheure principale), Dre Évelyne Vinet, et Dre Elham Rahme

Institution hôte de recherche : 
Centre universitaire de santé McGill

Contexte et objectif : 
Les parents atteints de maladies rhumatismales auto-immunes font face à des défis uniques pouvant affecter leur santé mentale. Pourtant, leurs besoins spécifiques durant la petite enfance de leurs enfants sont encore peu documentés. Des chercheur·e·s du Centre universitaire de santé McGill mènent une étude nationale afin de mieux comprendre et répondre à ces besoins.

Critères d’éligibilité : 
Si vous avez 18 ans ou plus, avez reçu un diagnostic de maladie rhumatismale auto-immune, vivez au Canada, êtes capable de lire en français ou en anglais, et êtes parent d’au moins un enfant âgé de 0 à 5 ans, vous pourriez être admissible.

Détails de la participation :
La participation consiste à remplir un sondage en ligne d’environ 40 minutes. En guise de remerciement, vous recevrez une carte-cadeau de 15 $.

Risques et confidentialité : 
Les risques sont minimes. Hormis le temps requis, certaines questions personnelles pourraient vous sembler inconfortables, mais vous êtes toujours libre de ne pas y répondre. Toutes vos réponses resteront confidentielles et seront conservées de manière sécurisée. Vos témoignages aideront à améliorer les services de soutien destinés aux parents vivant avec une maladie chronique pendant les premières années de la parentalité.

Date de début du recrutement : 1er mai 2025
Date de fin du recrutement : 31 décembre 2025

Coordonnées :
Si vous êtes intéressé à participer à cette étude, veuillez contacter la coordonnatrice de la recherche, Monica Vaillancourt, à [email protected], ou la chercheure principale, Dre Deborah Da Costa, à [email protected].

Project Title: 
Pregnancy and People with Multiple Chronic Health Conditions

Lead Researchers: 
Dr. Hilary Brown (University of Toronto Scarborough), Dr. Joel Ray, (Unity Health Toronto), and Dr. Simone Vigod (Women’s College Hospital)

Research Team Members: 
Dr. Karen Campbell (York University), Dr. Eyal Cohen (The Hospital for Sick Children), Dr. Liz Darling (McMaster University), Dr. Cindy-Lee Dennis(University of Toronto), Dr. Sonia Grandi (The Hospital for Sick Children), Dr. Laura Rosella (University of Toronto), Dr. Catherine Varner (Mount Sinai Hospital), Dr. Jannah Wigle (University of Toronto Scarborough), and Dr. Walter Wodchis (University of Toronto).

Research Host Institution:
University of Toronto Scarborough

Background & Purpose:
In the general population, people with multiple chronic conditions are a high-risk group. They have greater acute care use and higher premature mortality than those with only one chronic condition. They often experience fragmented and uncoordinated health care. There is virtually no research or clinical guidance on the perinatal care of people with multiple chronic health conditions, with available evidence examining pregnant people with single, rather than co-occurring chronic conditions.

The Pregnancy and People with Multiple Chronic Health Conditions Study aims to create new knowledge about perinatal outcomes and care provision in individuals with multiple chronic physical and/or mental health conditions. We want to know about your pregnancy care experiences, including your care just before pregnancy, and during pregnancy, labour and birth, and the postpartum period.

Eligibility Criteria: 

You can participate in this study if you:

• Are 18 years or older;
• Have multiple chronic physical and/or mental health conditions; and
• Have had a pregnancy in the last 5 years.

Participation Details: 
If you agree to take part in the study, you will complete an interview. You can do the interview over secure video chat (Zoom) or telephone with a researcher who has experience in chronic illness and pregnancy. The interview will take about 60 minutes.

The interview will include questions about:

• The types of care you received before pregnancy, and during pregnancy, labour and birth, and the postpartum period;
• What you liked and disliked about these care experiences;
• What you think could have made them better; and
• What you think should change about pregnancy care for people who have multiple physical and/or mental health conditions.

The interview will be audio-recorded so that we don’t lose the details of our conversation. You will get a $50 electronic gift card to thank you for your time.

Risks & Confidentiality:
Some of the questions might make you feel upset or uncomfortable. If you become upset or uncomfortable while completing the interview, you can take a break. You do not have to answer any questions that you do not want to, and you can stop the interview at any time. The researcher will give you information on supports that may help you in case you feel upset or uncomfortable.It is possible that some of the things you share could have legal risks. Sharing what the researcher believes to be an immediate risk to your safety or others, including a child, could have legal risks.

Your information will be kept as private as possible. If you agree to take part in the study, the researcher will ask for your name, mailing address, email address, and telephone number. This information will only be used to reach you about this study. You will be given a code number so that your name will stay private and will not be stored on any of your paper or computer study forms. All paper forms will be kept in a locked filing cabinet in a locked office, and all computer forms will have a password. Your name will not be used with anything you said in the interview. The information that you share will be destroyed after 10 years.

Recruitment Start Date: March 1, 2025
Recruitment End Date: May 31, 2026

Contact Details: 
If you have any questions, you can contact the Study Lead, Dr. Jannah Wigle, at [email protected] or (647) 691-4122

For more information, check out the study recruitment flyer: Recruitment Flyer

Titre du projet : 
Prévention des dommages aux aides à la mobilité lors de déplacements en avion

Équipe de recherché:
Tilak Dutta, PhD, (chercheur principal)

Institution hôte de recherche :
University Health Network

Contexte : 
La mobilité est un droit fondamental. Le principe d’équité renvoie ainsi à la capacité de se déplacer pour travailler, apprendre et se distraire. Tout individu devrait pouvoir sortir de chez lui et voyager sans obstacle. L’accessibilité des transports crée une société plus inclusive et plus profitable pour tout le monde. Il n’est pas rare que des aides à la mobilité (p. ex., fauteuil roulant, triporteur, quadriporteur) soient perdues ou endommagées lors de déplacements en avion, ce qui pose un problème.

Objectif : 
L’étude technique a pour objet d’explorer ce qui pourrait potentiellement causer la perte ou l’endommagement d’aides à la mobilité à l’une ou l’autre des étapes d’un déplacement par avion. Elle porte essentiellement sur les pertes ou les dommages causés en partance ou à destination des aéroports du Canada (y compris lors des étapes préparatoires, avant le vol, en vol et après le vol) au cours des cinq dernières années. L’équipe de recherche souhaite de cette façon découvrir ce qui peut causer les dommages aux aides à la mobilité et connaître les mesures possibles pour réduire le risque associé à la perte ou à l’endommagement d’aides à la mobilité.

Critères d’éligibilité :
Vous pouvez participer à cette étude si :

• Vous vous identifiez comme étant une personne en situation de handicap.
• Au cours des cinq (5) dernières années, vous avez pris l’avion en partance ou à destination d’un aéroport du Canada.
• Votre aide à la mobilité a été perdue ou endommagée lors d’un vol.

Détails de la participation:
La participation comprend un sondage en ligne (environ 10 minutes). Pour obtenir plus d’information ou accéder au sondage, allez au : engineeringhealth.ca/accessible-air-travel/.

Risques :
L’utilisation de la technologie pour répondre au sondage pourrait éventuellement causer de la fatigue et même de la frustration. Il est possible que vous ressentiez des inquiétudes de nature émotionnelle, y compris l’anxiété, la détresse ou la gêne, ou une tristesse occasionnée par les sujets abordés dans le sondage. Vous pouvez sauter les questions facultatives.

Date du début du recrutement : Jan 17, 2025
Date du fin du recrutement : Jan 17, 2026

Coordonnée
Si vous avez des questions, contactez Alison Whiting à [email protected] ou (416) 597-3422 x 3357

Investigators: Drs. Eng Kuan Moo, Andrew Speirs, and Sangeeta Murugkar

Research Host Institution: Carleton University

Recruitment Notice & Purpose of Study: We are looking for two volunteers located in Ottawa, who live with some form of  osteoarthritis and are currently undergoing any forms of treatment, to be consumer collaborators. The insights provided by the consumer collaborators in this study will inform the researchers on the functional benefits of specific treatment methods, which can be dependent on the dosage and treatment duration. This information can guide the development of laboratory efficacy tests of different treatment methods, and can accelerate the process of identifying clinical, patient-specific treatment methods that ultimately benefit those living with osteoarthritis. In the long term, findings of this study may guide future clinical protocols of intra-articular injection and physiotherapy for patients living with osteoarthritis.

Participation Details: The consumer collaborators will meet with the Principal Investigators (PIs) twice a year over a virtual platform for two hours, in which the PI(s) will provide research updates and the consumer collaborators will provide valuable perspectives on their experience of intra-articular injections and physiotherapy, which are directly applicable to the in vitro therapeutic treatment protocol planned for this study.

Background information: Osteoarthritis is thought to initiate at a thin layer of specialized tissue surrounding the cartilage cells, which acts as a ‘filter’ for cells. However, we know very little regarding the ‘filtering’ properties of this tissue region, and how molecules, beneficial or harmful, pass through this filter to/from the cells. We will address this knowledge gap by creating an osteoarthritis model in the lab and investigating the biophysical property changes to this specialized tissue layer through advanced imaging methods. We will also apply drugs and physiotherapy treatments to the laboratory osteoarthritis model. We expect to receive strong evidence on how osteoarthritis develops and how treatments can slow/stop osteoarthritis.

Eligibility criteria: Patients with osteoarthritis currently undergoing any forms of treatment, residing in Ottawa, Ontario.

Confidentiality protocols: Not applicable

Compensation Offered: No (if meeting in person, transportation and parking fees will be covered)

Study Investigators: Dr. Andy Kin On Wong and Sarah Costa

Research Host Institution: University Health Network (UHN)

Eligibility Criteria: We are seeking specific patient partners 50 years of age and older who have knee osteoarthritis and at least one of the following:

• osteoporosis,
• have experienced a fragility (minimal trauma) fracture,
• diabetes, pre-diabetes, or metabolic syndrome,
• currently have, or have a history of deep vein thrombosis or peripheral artery disease.

Background Information: As someone living with knee osteoarthritis, your perspective and insight are invaluable in guiding our research efforts. We believe that your involvement from the very beginning of our projects is crucial in ensuring that our research studies address the concerns and interests of individuals like yourself who are affected by arthritis.

Participation Details: In this role, you will actively contribute to shaping the research process by providing valuable insight into the types of information and outcomes that individuals with arthritis feel strongly about, or are eager to learn about. Your input will guide the design of new research goals, selection of research methods, including the analysis of diverse data sets such as imaging (CT, MRI, x-ray, DXA), hormonal profiles (estrogen and progesterone), and various surveys relating to symptoms and overall quality of life factors.

Furthermore, as a patient partner, you will contribute to the dissemination of research outcomes by participating in the planning of publications. You may also have the opportunity to present abstracts at conferences alongside other investigators, amplifying the impact of our research within the scientific community and beyond.

Participation in this research opportunity can be virtual or in person, and we ask for a commitment of several 0.5 to 1-hour meetings throughout the year (2-5), and then as needed depending on how involved you wish to be in the research process. The engagement will start whenever possible and end after completing dissemination activities with the opportunity to continue for other research studies. Your geographic location should not matter but we have a preference for individuals who may be able to attend some local conference meetings within Ontario.

Confidentiality Protocols & Compensation: Rest assured; all patient information will be kept strictly confidential. You will be paid for your time to attend meetings and any travel-related expenses for in-person meetings as applicable.

Start Date: Whenever you are available.
End Date: After publication with the potential to stay on for future projects.

Contact Information: If you are interested in becoming a patient partner or have any questions, please do not hesitate to contact us at (416) 340-4800 x 7922 or via email at [email protected].