title: Determining the research priorities for patients with chronic kidney disease not on dialysis.
abstract: BACKGROUND
  The importance of engaging key stakeholders, and patients in particular, in determining research priorities has been recognized. We sought to identify the top 10 research priorities for patients with non-dialysis chronic kidney disease (CKD), their caregivers, and the clinicians and policy-makers involved in their care.
  
  
  METHODS
  We used the four-step James Lind Alliance process to establish the top 10 research priorities. A national survey of patients with non-dialysis CKD (estimated glomerular filtration rate <45 mL/min/1.73 m 2 ), their caregivers, and the clinicians and policy-makers involved in their care was conducted to identify research uncertainties. A Steering Group of patients, caregivers, clinicians and researchers combined and reduced these uncertainties to 30 through a series of iterations. Finally, a workshop with participants from across Canada (12 patients, 6 caregivers, 3 physicians, 2 nurses, 1 pharmacist and 1 policy-maker) was held to determine the top 10 research priorities, using a nominal group technique.
  
  
  RESULTS
  Overall, 439 individuals responded to the survey and identified 1811 uncertainties, from which the steering group determined the top 30 uncertainties to be considered at the workshop. The top 10 research uncertainties prioritized at the workshop included questions about treatments to prevent progression of kidney disease (including diet) and to treat symptoms of CKD, provider- and patient-targeted strategies for managing CKD, the impact of lifestyle on disease progression, harmful effects of medications on disease progression, optimal strategies for treatment of cardiovascular disease in CKD and for early identification of kidney disease, and strategies for equitable access to care for patients with CKD.
  
  
  CONCLUSIONS
  We identified the top 10 research priorities for patients with CKD that can be used to guide researchers, as well as inform funders of health-care research.
authors.affiliation: Department of Medicine, University of Calgary, Calgary, AB, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
authors.forename: Brenda R
authors.initials: BR
authors.lastname: Hemmelgarn
authors.affiliation: Department of Medicine, University of Alberta, Edmonton, AB, Canada.
authors.forename: Neesh
authors.initials: N
authors.lastname: Pannu
authors.affiliation: Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
authors.forename: Sofia B
authors.initials: SB
authors.lastname: Ahmed
authors.affiliation: University of Toronto, Toronto, ON, Canada.
authors.forename: Meghan J
authors.initials: MJ
authors.lastname: Elliott
authors.affiliation: Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
authors.forename: Helen
authors.initials: H
authors.lastname: Tam-Tham
authors.affiliation: Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, ON, Canada.
authors.forename: Erin
authors.initials: E
authors.lastname: Lillie
authors.affiliation: Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, ON, Canada.|Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
authors.forename: Sharon E
authors.initials: SE
authors.lastname: Straus
authors.affiliation: Department of Medicine, University of Calgary, Calgary, AB, Canada.
authors.forename: Maoliosa
authors.initials: M
authors.lastname: Donald
authors.affiliation: Department of Medicine, University of Calgary, Calgary, AB, Canada.
authors.forename: Lianne
authors.initials: L
authors.lastname: Barnieh
authors.affiliation: Calgary, AB, Canada.
authors.forename: George C
authors.initials: GC
authors.lastname: Chong
authors.affiliation: Toronto, ON, Canada.
authors.forename: David R
authors.initials: DR
authors.lastname: Hillier
authors.affiliation: Vancouver, BC, Canada.
authors.forename: Kate T
authors.initials: KT
authors.lastname: Huffman
authors.affiliation: Toronto, ON, Canada.
authors.forename: Andrew C
authors.initials: AC
authors.lastname: Lei
authors.affiliation: Winnipeg, MB, Canada.
authors.forename: Berlene V
authors.initials: BV
authors.lastname: Villanueva
authors.affiliation: Halifax, NS, Canada.
authors.forename: Donna M
authors.initials: DM
authors.lastname: Young
authors.affiliation: Kidney Foundation of Canada, Montreal, QC, Canada.
authors.forename: Elisabeth A
authors.initials: EA
authors.lastname: Fowler
authors.affiliation: Department of Medicine, University of Calgary, Calgary, AB, Canada.|Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
authors.forename: Braden J
authors.initials: BJ
authors.lastname: Manns
authors.affiliation: Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, ON, Canada.|Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
authors.forename: Andreas
authors.initials: A
authors.lastname: Laupacis
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D035843:Biomedical Research / Q000639:trends*; D018450:Disease Progression; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006292:Health Priorities; D006801:Humans; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic / Q000628:therapy*; D055815:Young Adult
keywords: CKD; patient preferences; research priorities