title: Adapting Knowledge Translation Strategies for Rare Rheumatic Diseases.
abstract: Rare rheumatic diseases present unique challenges to knowledge translation (KT) researchers. There is often an urgent need to transfer knowledge from research findings into clinical practice to facilitate earlier diagnosis and better outcomes. However, existing KT frameworks have not addressed the specific considerations surrounding rare diseases for which gold standard evidence is not available. Several widely adopted models provide guidance for processes and problems associated with KT. However, they do not address issues surrounding creation or synthesis of knowledge for rare diseases. Additional problems relate to lack of awareness or experience in intended knowledge users, low motivation, and potential barriers to changing practice or policy. Strategies to address the challenges of KT for rare rheumatic diseases include considering different levels of evidence available, linking knowledge creation and transfer directly, incorporating patient and physician advocacy efforts to generate awareness of conditions, and selecting strategies to address barriers to practice or policy change.
authors.affiliation: From the Division of Pediatric Rheumatology, Department of Pediatrics, McMaster University, Hamilton; Department of Family and Community Medicine, and Institute of Health Policy Management and Evaluation, University of Toronto; Schwartz-Reisman Emergency Medicine Institute, Department of Emergency Medicine, Mount Sinai Hospital, Toronto, Ontario, Canada.T. Cellucci, MD, MScCH, FRCPC, Assistant Professor, Division of Pediatric Rheumatology, Department of Pediatrics, McMaster University; S. Lee, MD, MHSc (Ed), CCFP(EM), FCFP, Associate Professor, Department of Family and Community Medicine, University of Toronto, and Schwartz-Reisman Emergency Medicine Institute, Department of Emergency Medicine, Mount Sinai Hospital; F. Webster, PhD, Associate Professor, Department of Family and Community Medicine and Institute of Health Policy Management and Evaluation, University of Toronto. celluct@mcmaster.ca.
authors.forename: Tania
authors.initials: T
authors.lastname: Cellucci
authors.affiliation: From the Division of Pediatric Rheumatology, Department of Pediatrics, McMaster University, Hamilton; Department of Family and Community Medicine, and Institute of Health Policy Management and Evaluation, University of Toronto; Schwartz-Reisman Emergency Medicine Institute, Department of Emergency Medicine, Mount Sinai Hospital, Toronto, Ontario, Canada.T. Cellucci, MD, MScCH, FRCPC, Assistant Professor, Division of Pediatric Rheumatology, Department of Pediatrics, McMaster University; S. Lee, MD, MHSc (Ed), CCFP(EM), FCFP, Associate Professor, Department of Family and Community Medicine, University of Toronto, and Schwartz-Reisman Emergency Medicine Institute, Department of Emergency Medicine, Mount Sinai Hospital; F. Webster, PhD, Associate Professor, Department of Family and Community Medicine and Institute of Health Policy Management and Evaluation, University of Toronto.
authors.forename: Shirley
authors.initials: S
authors.lastname: Lee
authors.affiliation: From the Division of Pediatric Rheumatology, Department of Pediatrics, McMaster University, Hamilton; Department of Family and Community Medicine, and Institute of Health Policy Management and Evaluation, University of Toronto; Schwartz-Reisman Emergency Medicine Institute, Department of Emergency Medicine, Mount Sinai Hospital, Toronto, Ontario, Canada.T. Cellucci, MD, MScCH, FRCPC, Assistant Professor, Division of Pediatric Rheumatology, Department of Pediatrics, McMaster University; S. Lee, MD, MHSc (Ed), CCFP(EM), FCFP, Associate Professor, Department of Family and Community Medicine, University of Toronto, and Schwartz-Reisman Emergency Medicine Institute, Department of Emergency Medicine, Mount Sinai Hospital; F. Webster, PhD, Associate Professor, Department of Family and Community Medicine and Institute of Health Policy Management and Evaluation, University of Toronto.
authors.forename: Fiona
authors.initials: F
authors.lastname: Webster
mesh_terms: D006801:Humans; D019359:Knowledge; D012216:Rheumatic Diseases / Q000175:diagnosis* / Q000628:therapy*; D057170:Translational Research, Biomedical / Q000379:methods*
keywords: PEDIATRIC RHEUMATIC DISEASES; RARE DISEASES; TRANSLATIONAL MEDICAL RESEARCH