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.

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.