Recrutement de participants aux études

Project Title: 
Exploring Caregiver Coping Strategies and Quality of Life in Families of Children with Juvenile Idiopathic Arthritis (JIA) Across Alberta

Research Team: 
Taiye Alawiye, Dr. Denise Spitzer, Dr. Lesley Pritchard

Research Host Institution: 
University of Alberta, School of Public Health

Background:
Parents and family members caring for children with polyarticular JIA often balance caregiving responsibilities with their well-being, which can impact their quality of life. This study explores how these experiences affect families.

Purpose: 
This study examines the lived experiences of family members in the caregiver role for children with polyarticular JIA. It explores the emotional, physical, and social impacts of caregiving, laying the foundation for larger research to improve health services and community supports.

Eligibility Criteria: 

• Unpaid primary caregiver (parent, stepparent, or family member aged 18+)

• Child aged 2-12 with polyarticular JIA

• Resident of Alberta

• ​Able to speak and understand English

​Participation Details: 
One-on-one Zoom interview (up to 60 minutes) and a short demographic form. Participants will receive a $25 GiftBit™ gift card.

Risks & Confidentiality: 
Discussing caregiving may cause emotional discomfort. Support resources will be provided. All information will be anonymized and securely stored. Participants may withdraw up to one week before transcription.

Recruitment Start Date: March 1, 2025
Recruitment End Date: July 31, 2025

Contact Details: 
To participate, please email talawiye@ualberta.ca with the subject line: “Interest in JIA Study” for next steps. If you have questions about your rights, contact the University of Alberta Research Ethics Office at ethics@ualberta.ca or +1(780)492-2615 (Ethics ID: Pro00148741).

Project Title: 
Helping Hand for Hand OA: A structured elicitation of patients’ needs and preferences

Research Team: 
Principal Investigators: Dr. Joy MacDermid, PT PhD, and Dr. Pavlos Bobos, PT PhD  
Co-Investigators: Ms. Dimitra Vasiliki Pouliopoulou, PT MSc, and Ms. Katrina Munro, MPT  

Research Host Institution: 
St. Joseph’s Hand and Upper Limb Centre, Western Univeristy

Study Background:
Are you a Canadian living with hand osteoarthritis? St. Joseph’s Hand and Upper Limb Centre is conducting a new survey to assess the needs and preferences of individuals with hand osteoarthritis regarding the delivery of Joint Protection strategies. This will help create more personalized educational resources and improve clinical practice.If you have previously participated in our research, please note that this is a different survey focusing on new aspects of Joint Protection delivery.

Study Purpose: 
The purpose of this study is to quantify hand osteoarthritis patients' needs and preferences and assess their priorities in the delivery of joint protection strategies to inform the development of a joint protection program for hand arthritis. This knowledge is expected to benefit future patients by educating them in management strategies to reduce pain and improve hand function, and clinicians in providing better care for their patients with hand arthritis. This study is a graduate student project at Western University.

Eligibility Criteria:
You are invited to participate in this study if you are:

• A patient with hand osteoarthritis

• Living in Canada

Participation Details: 
This study is an Online Survey. Your participation will include an online survey that takes about 10 minutes to complete. This will occur once. At the beginning of the Survey, you will be asked to fill out some information on your disease, your symptoms and your age. This will help the study team assess if you meet the eligibility criteria. If you meet the eligibility criteria, you will be provided with a link that will lead you to a different website, called Sawtooth. This is where you will fill out the main part of the Survey. No personal information or information about your disease will be collected in this stage. Once this stage is completed, you will be re-directed back to this website to answer some questions on your demographics. At the end of the survey, you will be asked whether you wish to participate in a follow-up interview. If you wish to do so, you will be asked to provide you contact information (email address, or telephone number) according to your preferred way of communication if you feel comfortable, so that the research team can reach out to you to provide more information about the follow-up study.

Participating in this study is voluntary. You do not waive any of your legal rights by giving consent for the survey. Consent is obtained by clicking on the survey. This Survey is completely anonymous and therefore we cannot remove submitted surveys from data collection and analysis. If you want to withdraw from the study, you must do so before you submit the survey or else all responses will be recorded. You may refuse to participate or refuse to answer any questions from the study at any time with no effect to your future care. If you have concerns or would like to withdraw you can contact the research co-ordinator, Katrina Munro or the student investigator, Dimitra Pouliopoulou.

To participate, click on the survey link provided here: https://redcap.lawsonresearch.ca/surveys/?s=JPWLNR433NT494YH

Potential Risks and Benefits:
If participants feel uncomfortable at any time during the survey they may stop the survey or chose not to respond to the questions. There are no direct benefits to you from completing this study. However, these study results will help inform the creation of educational videos for patients with hand arthritis.

Confidentiality: 
Your individual results will be held in strict confidence. No person, other than the study team, will have access to your study related records without your permission. A copy of this letter will be able for you if you want. The only information that would be collected is your demographics and your responses to the survey questions. Data store of REDCap’s platform is stored on secured hospital servers. Representatives of Western University Health Sciences Research Ethics Board or/and representatives of Lawson Quality Assurance Education Program may require access to your study-related records or follow-up with you to monitor the conduct of this research. In accordance with Lawson policy, your information and study data will be retained by the study investigators for 15 years.

Contact Details: 
If you have questions about taking part in this study, you can directly contact: 
Dr. Joy MacDermid, Principal Investigator, can be contacted at 519-646-6000 ext 64636 
Katrina Munro, Study Research Assistant, can be contacted at 519-646-6100 ext 64544
Dimitra Pouliopoulou, Student Investigator, can be contacted at 519-646-6100 ext 64544

If you have any other questions about your rights as a research participant or about the conduct of the study, you may contact: St Joseph’s Health Care London Patient Relations Consultant at 519-646-6100 ext. 64727. 

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 Monica.vaillancourt@rimuhc.ca, ou la chercheure principale, Dre Deborah Da Costa, à Deborah.dacosta@mcgill.ca.

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 jannah.wigle@utoronto.ca or (647) 691-4122

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

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 sarah.costa@uhn.ca.