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      Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD): Form and Function

      research-article
      1 , 2 , 1 , 3 , 4 , 5 , 6 , 7 , 2 , 8 , 9 , 9 , 10 , 11 , 9 , 12 , 13 , 14 , 15 , 16 , 17 , 8 , 9 , 18 , 19 , 20 , 21 , 18 , 22 , 23 , 10 , 24 , 9 , 14 , 25 , 26 , 17 , 27 , 28 , 8 , 9 , 17 , 28 , 17 , 26 , 17 , 28 , 26 , 2 , 8 , 10 , 24 , 19 , 21 , 9 , 29 , 30 , 9 , 19 , 20 , 21
      Canadian Journal of Kidney Health and Disease
      SAGE Publications
      patient-oriented research, patient engagement, chronic kidney disease, clinical trials, biomedical research, nephrology, knowledge translation

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          Abstract

          Purpose of review

          This article serves to describe the Can-SOLVE CKD network, a program of research projects and infrastructure that has excited patients and given them hope that we can truly transform the care they receive.

          Issue

          Chronic kidney disease (CKD) is a complex disorder that affects more than 4 million Canadians and costs the Canadian health care system more than $40 billion per year. The evidence base for guiding care in CKD is small, and even in areas where evidence exists, uptake of evidence into clinical practice has been slow. Compounding these complexities are the variations in outcomes for patients with CKD and difficulties predicting who is most likely to develop complications over time. Clearly these gaps in our knowledge and understanding of CKD need to be filled, but the current state of CKD research is not where it needs to be. A culture of clinical trials and inquiry into the disease is lacking, and much of the existing evidence base addresses the concerns of the researchers but not necessarily those of the patients.

          Program overview

          The Canadian Institutes of Health Research (CIHR) has launched the national Strategy for Patient-Oriented Research (SPOR), a coalition of federal, provincial, and territorial partners dedicated to integrating research into care. Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is one of five pan-Canadian chronic kidney disease networks supported through the SPOR. The vision of Can-SOLVE CKD is that by 2020 every Canadian with or at high risk for CKD will receive the best recommended care, experience optimal outcomes, and have the opportunity to participate in studies with novel therapies, regardless of age, sex, gender, location, or ethnicity.

          Program objective

          The overarching objective of Can-SOLVE CKD is to accelerate the translation of knowledge about CKD into clinical research and practice. By focusing on the patient’s voice and implementing relevant findings in real time, Can-SOLVE CKD will transform the care that CKD patients receive, and will improve kidney health for future generations.

          Abrégé

          Objectif de la revue:

          Le présent article décrit le réseau Can-SOLVE CKD, un réseau basé sur un programme de projets et d’infrastructures de recherche qui ont soulevé l’enthousiasme des patients et qui nourrissent leur espoir de voir une réelle réforme des soins qu’ils reçoivent.

          Contexte:

          L’insuffisance rénale chronique (IRC) est un trouble complexe qui affecte plus de quatre millions de Canadiens et qui engendre au système de santé canadien des coûts annuels de l’ordre de 40 milliards de dollars. Les données probantes sous-tendant les soins en IRC sont rares, et dans les branches où ces données existent, leur intégration à la pratique clinique se montre insuffisante. Ces problèmes sont aggravés d’abord par la grande variabilité du pronostic de la maladie, puis par la difficulté de prévoir quels patients seront les plus susceptibles de développer des complications. Ces lacunes de connaissances et de compréhension de l’IRC doivent manifestement être comblées; cependant, force est de constater que la recherche actuelle sur l’IRC est inadéquate. Outre l’absence d’une culture médicale qui encourage les essais cliniques, les données recueillies rejoignent les préoccupations des chercheurs sans nécessairement refléter celles des patients.

          Présentation du programme:

          Lancée par l’Institut de recherche en santé du Canada (IRSC), la Stratégie de recherche axée sur le patient (SRAP) consiste en une coalition de partenaires fédéraux, provinciaux et territoriaux visant l’intégration des résultats de la recherche dans les soins prodigués aux patients. Le réseau Can-SOLVE CKD (Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease) est l’un des cinq réseaux de recherche pancanadiens sur les maladies chroniques soutenus par la SRAP. L’objectif du réseau Can-SOLVE CKD est tripartite : on souhaite que, d’ici 2020, tous les Canadiens atteints d’IRC (ou à haut risque de développer la maladie) 1- reçoivent les meilleurs soins; 2- obtiennent des résultats de santé optimaux; 3- aient l’occasion de participer à des études cliniques pertinentes (et ce, sans égard à leur âge, leur sexe, leur ethnicité ou leur lieu de résidence).

          Objectif du programme:

          L’objectif principal du réseau Can-SOLVE CKD est d’accélérer l’application des connaissances sur l’IRC, tant en recherche qu’en pratique clinique. En s’intéressant aux préoccupations des patients et en appliquant en temps réel les résultats pertinents de la recherche, Can-SOLVE CKD transformera la façon dont seront soignés les patients atteints d’IRC et améliorera la santé rénale globale des générations futures.

          Related collections

          Most cited references35

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          Unified criteria for ultrasonographic diagnosis of ADPKD.

          Individuals who are at risk for autosomal dominant polycystic kidney disease are often screened by ultrasound using diagnostic criteria derived from individuals with mutations in PKD1. Families with mutations in PKD2 typically have less severe disease, suggesting a potential need for different diagnostic criteria. In this study, 577 and 371 at-risk individuals from 58 PKD1 and 39 PKD2 families, respectively, were assessed by renal ultrasound and molecular genotyping. Using sensitivity data derived from genetically affected individuals and specificity data derived from genetically unaffected individuals, various diagnostic criteria were compared. In addition, data sets were created to simulate the PKD1 and PKD2 case mix expected in practice to evaluate the performance of diagnostic criteria for families of unknown genotype. The diagnostic criteria currently in use performed suboptimally for individuals with mutations in PKD2 as a result of reduced test sensitivity. In families of unknown genotype, the presence of three or more (unilateral or bilateral) renal cysts is sufficient for establishing the diagnosis in individuals aged 15 to 39 y, two or more cysts in each kidney is sufficient for individuals aged 40 to 59 y, and four or more cysts in each kidney is required for individuals > or = 60 yr. Conversely, fewer than two renal cysts in at-risk individuals aged > or = 40 yr is sufficient to exclude the disease. These unified diagnostic criteria will be useful for testing individuals who are at risk for autosomal dominant polycystic kidney disease in the usual clinical setting in which molecular genotyping is seldom performed.
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            The randomized registry trial--the next disruptive technology in clinical research?

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              Effect of frequent nocturnal hemodialysis vs conventional hemodialysis on left ventricular mass and quality of life: a randomized controlled trial.

              Morbidity and mortality rates in hemodialysis patients remain excessive. Alterations in the delivery of dialysis may lead to improved patient outcomes. To compare the effects of frequent nocturnal hemodialysis vs conventional hemodialysis on change in left ventricular mass and health-related quality of life over 6 months. A 2-group, parallel, randomized controlled trial conducted at 2 Canadian university centers between August 2004 and December 2006. A total of 52 patients undergoing hemodialysis were recruited. Participants were randomly assigned in a 1:1 ratio to receive nocturnal hemodialysis 6 times weekly or conventional hemodialysis 3 times weekly. The primary outcome was change in left ventricular mass, as measured by cardiovascular magnetic resonance imaging. The secondary outcomes were patient-reported quality of life, blood pressure, mineral metabolism, and use of medications. Frequent nocturnal hemodialysis significantly improved the primary outcome (mean left ventricular mass difference between groups, 15.3 g, 95% confidence interval [CI], 1.0 to 29.6 g; P = .04). Frequent nocturnal hemodialysis did not significantly improve quality of life (difference of change in EuroQol 5-D index from baseline, 0.05; 95% CI, -0.07 to 0.17; P = .43). However, frequent nocturnal hemodialysis was associated with clinically and statistically significant improvements in selected kidney-specific domains of quality of life (P = .01 for effects of kidney disease and P = .02 for burden of kidney disease). Frequent nocturnal hemodialysis was also associated with improvements in systolic blood pressure (P = .01 after adjustment) and mineral metabolism, including a reduction in or discontinuation of antihypertensive medications (16/26 patients in the nocturnal hemodialysis group vs 3/25 patients in the conventional hemodialysis group; P < .001) and oral phosphate binders (19/26 patients in the nocturnal hemodialysis group vs 3/25 patients in the conventional dialysis group; P < .001). No benefit in anemia management was seen with nocturnal hemodialysis. This preliminary study revealed that, compared with conventional hemodialysis (3 times weekly), frequent nocturnal hemodialysis improved left ventricular mass, reduced the need for blood pressure medications, improved some measures of mineral metabolism, and improved selected measures of quality of life. isrctn.org Identifier: ISRCTN25858715.
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                Author and article information

                Journal
                Can J Kidney Health Dis
                Can J Kidney Health Dis
                CJK
                spcjk
                Canadian Journal of Kidney Health and Disease
                SAGE Publications (Sage CA: Los Angeles, CA )
                2054-3581
                17 January 2018
                2018
                : 5
                : 2054358117749530
                Affiliations
                [1 ]The University of British Columbia, Vancouver, Canada
                [2 ]BC Provincial Renal Agency, Vancouver, Canada
                [3 ]First Nations Health Authority, West Vancouver, British Columbia, Canada
                [4 ]Memorial University of Newfoundland, St. John’s, Newfoundland and Labrador, Canada
                [5 ]Ryerson University, Toronto, Ontario, Canada
                [6 ]University of Ottawa, Ontario, Canada
                [7 ]Ottawa Hospital Research Institute, Ontario, Canada
                [8 ]Providence Health Care Research Institute, Vancouver, British Columbia, Canada
                [9 ]Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
                [10 ]University of Manitoba, Winnipeg, Canada
                [11 ]Children’s Hospital Research Institute of Manitoba, Winnipeg, Canada
                [12 ]Université de Montréal, Québec, Canada
                [13 ]The Kidney Foundation of Canada, Montreal, Québec, Canada
                [14 ]Western University, London, Ontario, Canada
                [15 ]Institute for Clinical Evaluative Sciences, London, Ontario, Canada
                [16 ]St. Michael’s Hospital, Toronto, Ontario, Canada
                [17 ]University of Toronto, Ontario, Canada
                [18 ]Ontario Renal Network, Toronto, Canada
                [19 ]University of Calgary, Alberta, Canada
                [20 ]Foothills Medical Centre, Calgary, Alberta, Canada
                [21 ]The Interdisciplinary Chronic Disease Collaboration, Calgary, Alberta, Canada
                [22 ]University of Alberta, Edmonton, Canada
                [23 ]University of Saskatchewan, Saskatoon, Canada
                [24 ]Seven Oaks General Hospital, Winnipeg, Manitoba, Canada
                [25 ]Lawson Health Research Institute, London, Ontario, Canada
                [26 ]The Hospital for Sick Children, Toronto, Ontario, Canada
                [27 ]Toronto General Hospital, Ontario, Canada
                [28 ]University Health Network, Toronto, Ontario, Canada
                [29 ]McMaster University, Hamilton, Ontario, Canada
                [30 ]Population Health Research Institute, Hamilton, Ontario, Canada
                Author notes
                [*]Adeera Levin, The University of British Columbia, St. Paul’s Hospital, 1081 Burrard Street, Room 6010A, Vancouver, British Columbia, Canada V6Z 1Y6. Email: alevin@ 123456providencehealth.bc.ca
                Article
                10.1177_2054358117749530
                10.1177/2054358117749530
                5774731
                29372064
                3a3e8831-9a78-4530-8d24-d624c6856a9a
                © The Author(s) 2018

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 16 May 2017
                : 20 October 2017
                Funding
                Funded by: Canadian Institutes of Health Research, FundRef https://doi.org/10.13039/501100000024;
                Award ID: SPOR Networks in Chronic Disease
                Categories
                Program Report
                Custom metadata
                January-December 2018

                patient-oriented research,patient engagement,chronic kidney disease,clinical trials,biomedical research,nephrology,knowledge translation

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