Recrutement de participants aux études

Titre du projet : 
Colliger la voix des patients atteints de maladies auto-immunes (COVAD)-3

Noms des chercheurs de l'équipe : 
Co-chercheur principal : Dr Latika Gupta, Université de Birmingham

Établissement d'accueil de la recherche : 
Étude électronique multicentrique internationale impliquant la collaboration de plus de 100 institutions à travers le monde

Contexte et objectifs de l'étude :
L'étude COVAD-3 est une vaste enquête transversale en ligne multicentrique conçue pour explorer les problèmes critiques centrés sur le patient qui touchent les personnes atteintes de maladies auto-immunes. En collectant des données complètes rapportées par les patients, l'enquête évaluera les dimensions du bien-être telles que l'activité de la maladie, la douleur, la fatigue, la fonction physique, la qualité de vie et la santé physique et mentale. De plus, elle examinera le rôle de facteurs tels que les déterminants sociaux de la santé, les comorbidités, l'adhésion aux médicaments, l'alimentation, l'exercice, la santé reproductive et les comportements liés au mode de vie. Cette étude vise à comparer ces facteurs entre diverses maladies auto-immunes et avec des individus en bonne santé, contribuant à une compréhension holistique des défis physiques et psychosociaux rencontrés. En identifiant les besoins spécifiques au sein de ces communautés, la recherche orientera des interventions ciblées et améliorera le soutien à long terme et la qualité de vie des personnes vivant avec des maladies auto-immunes.

Critères d'éligibilité :
Adultes âgés de 18 ans et plus atteints ou non de maladies auto-immunes.

Détails de la participation, y compris l'engagement de temps et les risques possible :
Cette étude a été approuvée par le Comité d'Éthique de l'Institution (IRB) ou le comité d'éthique (SGPGIMS, Lucknow), qui régit la conduite appropriée de cette étude. Les réponses des participants seront confidentielles et anonymes et seront stockées en toute sécurité auprès de l'Investigateur Principal de l'étude. Toutes les réponses fournies seront anonymisées, de sorte que ni l'équipe de recherche ni d'autres répondants ne pourront savoir quelles réponses appartiennent à quel participant.

En moyenne, le questionnaire prendra quinze minutes à remplir. Les participants peuvent le compléter en une seule fois ou y accéder à plusieurs reprises pour le terminer par étapes, selon leur convenance.

Lieu d'étude :
Cette étude est menée en ligne et ouverte aux participants du monde entier. Si vous répondez aux critères et souhaitez participer, veuillez cliquer ici pour remplir le questionnaire.

Coordonnées : 
Pour toute question concernant ce questionnaire, veuillez contacter covadstudy@gmail.com et drlatikagupta@gmail.com.

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. 

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.