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KidneyLink: Connecting Canadians to Kidney Research

Whether you are a patient, care partner, donor, or family member, you can make valuable contributions to research. Your skills and experience will help researchers understand what is most important to those with lived experience and develop better studies. That’s why The Kidney Foundation of Canada and the Can-SOLVE CKD Network have partnered to create KidneyLink, a national platform where you can learn about and connect to kidney research taking place across Canada. KidneyLink is your connection to kidney research teams across Canada looking to work with people like you. From a user-friendly portal, you can search for opportunities to get involved, learn about new research findings, and access research training and resources.

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Virtual
Generative Artificial Intelligence among Transplant Patient Partners

Artificial intelligence has had an increasingly prevalent role within the healthcare system within the last few decades in streamlining the medical processes. Significant research has explored the credibility of AI tools in forecasting conditions and optimizing decision-making processes and there remains significant interest in incorporating AI in in healthcare among the medical community. AI has the potential to improve self-management of complex conditions such as pre and post-solid organ transplant procedures due to its learning process. Forms of generative artificial intelligence such as natural languaging processors (NLPs) can further target the patient-facing side given their adaptability from a language comprehension lens. Large language processing can simplify difficult data and make it accessible to all audiences. This makes it an important area of exploration — understanding how patients feel about the advent of this technology and how they can use it to improve patient education moving forward. Given that patients are the center of the clinical experience and given the increased focus on patient-centred care and increased accessibility of generative AI tools, we need to examine the role of generative AI in the patient experience in clinical care, such as transplants. Understanding the experiences of transplant partners will allow us to tailor the transplant educational narrative and direction for patients to prioritize comprehension and autonomy. This will also, therefore, streamline the already complex transplant process.

Apply by 2024-04-30

Virtual
Patient perceptions on shared decision-making about deceased donor kidneys

Transplantation is a life-saving therapy for patients with kidney disease, but patients continue to deteriorate on the waitlist. Meanwhile, sometimes physicians decline deceased donor kidney offers on behalf of their patients without a discussion with them. The purpose of this study is to learn about how people feel about decision-making about deceased donor kidneys. We also want to learn what people know about how kidneys are allocated and how they feel about less than ideal kidneys. Finally, we’d like to learn about how people prefer to be educated about this topic. This study is being conducted by researchers from the University of Saskatchewan and University of Montreal. --- La transplantation est un traitement vital pour les personnes atteintes d’une maladie rénale. Cependant, certain(e)s patient(e)s décèdent en attente de cette intervention. Il arrive que des médecins refusent les offres de reins de donneur(euse)s décédé(e)s au nom de leurs patient(e)s sans en discuter avec eux car ils jugent les reins non optimaux. L’objectif de cette étude est de recueillir l’opinion des patient(e)s et des proches aidant(e)s à propos de la prise de décision relative aux reins de donneur(euse)s décédé(e)s. Nous souhaitons également découvrir ce que les gens savent de l’attribution des reins et ce qu’ils pensent des reins dont l’état n’est pas optimal. Enfin, nous cherchons à savoir comment les gens préfèrent être renseignés à ce sujet. Vous êtes admissible à participer à cette étude si vous êtes une personne ayant subi une transplantation rénale, un(e) candidat(e) à une transplantation ou un proche aidant(e). En participant à l’étude, vous devrez répondre à un questionnaire en ligne.

Apply by 2024-02-29

Virtual
Development of recommendations on standard core outcome set for clinical trials of physical rehabilitation in adults across the continuum of solid organ transplantation

Drs. Sunita Mathur and Tania Janaudis-Ferreira (CDTRP Theme 5 investigators) are conducting a Delphi Survey Study to identify core outcome sets for physical rehabilitation in solid organ transplantation. This core outcome set will help inform randomized controlled trials on important outcome measures that should be incorporated within this research area. We are looking for heart and lung transplant recipients (i.e. patient partners) to participate. If you are interested, please see the study information below. Questions can be directed to Sunita Mathur - sunita.mathur@queensu.ca or transplantrehab@queensu.ca

Apply by 2024-04-22

Virtual
This opportunity is now closed

Inspiratory Muscle Training in Lung Transplant Candidates and Implications on Early Post-Transplant Outcomes: A Pilot and Feasibility Randomized Clinical Trial

Recovery after lung transplantation may be challenging after a long stay in the intensive care unit or hospital after surgery. The structure and function of the diaphragm (most important breathing muscle) is very important for good recovery after surgery. Training this muscle before surgery may provide "extra reserve" to cope with the stresses after surgery. Rehabilitation guidelines suggest that inspiratory muscle training (IMT) combined with standard whole-body exercises prior to major surgery can reduce post-operative complications and expedite recovery. In major thoracic surgery or organ transplantation, the mechanisms and clinical benefits of IMT have not been well established. The lung transplant population represents a unique group to study the benefits of pre-operative IMT. We propose to study 100 lung transplant patients awaiting surgery who will be randomized to receive either: 1) IMT and standard rehabilitation or 2) standard rehabilitation alone across 4 centers in Canada. Participants in group 1 will use a well-established respiratory muscle training device to train twice daily until transplantation. All participants will undergo standard rehabilitation until the time of surgery and 3-months post-transplant. In a subset of the 100 patients, muscle biopsies of the diaphragm will be performed in the Toronto program at the time of surgery. This study will determine if the research design is feasible. Secondary measures will evaluate breathlessness, quality of life, diaphragm function and cellular characteristics, and clinical outcomes 3-months post-transplant. This study will provide a unique opportunity to understand whether IMT is feasible across 4 transplant centers and get an assessment of post-operative outcomes and mechanisms underlying IMT. This study may serve as a model for examining IMT as part of pre-operative rehabilitation in a number of patient populations undergoing major surgery.

Apply by 2023-03-08

Virtual
This opportunity is now closed

EMPOWER: A 12-week online wellness program for people 50+ who have received an organ transplant

EMPOWER is a 12-week online mind-body wellness program for people who are 50+ and have received an organ transplant. The program will be delivered online, and include follow-along mindful movement, breathwork and meditation routines, and a psychology-based coping skills program. Participants may be assigned to start right away or in 3 months' time. As part of the research process, they may also receive weekly brief check-ins from the study team. Participants are asked to complete a minimum of 90-12o minutes on program content each week.

Apply by 2025-05-19

Virtual
This opportunity is now closed

Outcomes of organs transplanted after Medical Assistance in Dying in the province of Québec

Since the initial development of the program in 2017, donation after Medical Assistance in Dying (MAID) has grown substantially in Québec. Today almost 15% of all donors in Québec come from this pathway and 182 organs were transplanted from 64 donors between 2018 and 2022. However, while transplant programs informally report that recipients of these organs have had favorable outcomes, very little scientific data has been published on the topic. Our project aims to evaluate how the patients who received these kidneys, livers, and lungs are doing after the transplant using standardized outcome definitions. We will compare to patients who received organs from traditional donation pathways such as after brain death or living donation. This will provide important knowledge that can be used to: encourage programs to develop or improve their donation after MAID programs; give patients who are considering donation after MAID more information about the impact their gift could make; serve as a pilot project for a Canada wide program that would evaluate similar questions.

Apply by 2023-04-03

Virtual
This opportunity is now closed

CARP COVID-19 Survey

In this survey, CARP is asking about your current perception of COVID-19. They are seeking greater insight into how immune-compromised people are navigating this 'new normal' way of life during the pandemic.

Apply by 2023-04-12

Virtual
This opportunity is now closed

Canadian Society of Transplantation - Abstract Reviewer for Annual Conference

The Canadian Society of Transplantation (CST) hosts an annual conference, which will take place in Oct 2023. Researchers and clinicians submit summaries of their research (scientific abstracts and lay/plain language summaries) which are reviewed by their peers from the scientific committee, and also by patient-family-donor partners to determine their suitability for teh conference. Top rated abstracts are also selected for awards, with 2 awards for the best lay/plain language summaries, selected by PFD partners.

Apply by 2023-05-15

Virtual
This opportunity is now closed

PROBE Pilot RCT

Kidney transplant rejection remains a major issue for children after kidney transplantation. Please note that rejection episodes are the primary contributor to premature kidney graft failure. Current clinical monitoring with blood tests like serum creatinine is ineffective in identifying early rejection. We have developed and validated a urine test called CXCL10 that effectively identifies inflammation within the transplant and is an early sign acute rejection. This clinical trial will evaluate how regular screening of CXCL10 can improve long-term graft function by effectively identifying and treating episodes of graft inflammation at an early stage before there is any detectable clinical impact from kidney damage. This study will randomize children who are more than six months after their kidney transplant to either receive the intervention of serial monitoring by urinary CXCL10 or will have samples collected as part of a control group. They will be followed for two years, two ascertain changes in kidney function in that time. The group that is assigned to do serial monitoring will have additional testing if the CXCL10 level is high and will receive treatment based on the additional testing which includes diagnosis of rejection. This 1st stage of the trial is to conduct a pilot study that will demonstrate the feasibility of the larger, definitive clinical trial. The goals will be to the establish that 1) we can meet a target to enroll and randomize an initial 60 patients from 3 centers to the study; 2) we can execute the logistical aspects of the trial including obtaining samples on time, CXCL10 testing and reporting, and application of the clinical protocol for positive CXCL10 tests; and 3) to determine the most economical approach for testing in the definitive trial. The findings of this trial will be used to support a subsequent application for a larger, definitive, multicenter clinical trial.

Apply by 2023-10-30

Virtual

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