Clinical Trials and Preclinical Infrastructure Asset Map - Life Sciences

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256 BRITISH COLUMBIA APPENDIX 8. Provincial And National Patient Registries Involving B.C. Investigators (cont’d) Name of Registry/ URL B.C. Contact Description Cystic Fibrosis Foundation Patient Data Registry (no URL) COPD Registry at The Lung Centre, VGH (No URL) Other B.C. Trauma Registry (www2. itssti.hc-sc.gc.ca/clf/clfinven- tory.nsf/idview/030204164816-KC- KROpenDocument&lang=E) CORR (Canadian Organ Replacement Register) Transplant Registry (http://www.cihi.ca/corr) Integrated Public Health Information System (iPHIS) (www.phac-aspc.gc.ca/php-psp/ciphs-eng. php#wiphis) ARCHIVE (International Registry for Childhood Vasculitis) N/A Canadian on-line patient data surveillance system (see www.gcdisclosure-divulgationsc. phac-aspc.gc.ca/phac/pd/pd_grants.nsf/WEBbydetails/4D1B39E580E78B9F8525734000500 2ADOpenDocument&L=E&). Jeremy Road, Medical Director of the COPD Clinic jroad@interchange.ubc.ca Tel: 604 875-4241 Sharon Kasic, VGH sharon.kasic@vch.ca Tel: 604-875-4748 John Gill, Chair, CORR Transplant Registry, St Paul’s Hospital jgill@providencehealth.bc.ca Tel: 604-806-9048 Dilma Sandrin, iPHIS Program Manager, BCCDC Tel: 604-707-2501 David Cabral, BCCH. dcabral@cw.bc.ca Tel: 604-875-2437. Localized registry of COPD patients. Collects and maintains data on all trauma patients admitted to any of the nine trauma receiving facilities in B.C. The primary purpose is to improve and maintain the quality of patient care. Other purposes of this data source are for epidemiology, research, planning, injury surveillance; and contributing to injury prevention programs. CORR records, analyzes and reports on the level of activity and outcomes of vital organ transplantation and renal dialysis activities in Canada. It keeps statistics on transplant numbers, donor numbers and waiting lists. An automated, integrated, client health record and reporting system that supports public health provider interventions, tracking, follow-up, case management, and reporting. iPHIS includes immunization tracking, communicable disease case management, and surveillance components and is designed to be used centrally, providing secure access to one client record by multiple public health providers and programs and allowing communicable disease surveillance and immunization information to be shared. Data available for project-specific research purposes. US/Canadian registry of children with Wegener’s Granulomatosis and related small-medium vessel chronic vasculitis populated by all pediatric rheumatology centres (see www.vasculitisfoundation.org/registryofchildrenwithWGandrelatedvasculitides). PROMIS (www.bcrenalagency.ca/professionals/ promis/default.htm) Mirek Piaseczny, B.C. Provincial Renal Agency mpiaseczny@bcpra.ubc.ca Tel: 604-806-8647 Database of all nephrology patients on dialysis, with CKD and before/ after transplantation. Contains all patient records and outcomes from B.C.’s 37 renal units. Care providers can access information about a patient’s medical care, no matter where the care is delivered.
CLINICAL TRIALS AND PRECLINICAL INFRASTRUCTURE ASSET MAP 257 APPENDIX 9. HEALTHCARE RESEARCH CENTRES The following table has been split into different categories as follows: 1. Broad-based • Providence Health Care Research Institute • Vancouver Coastal Health Research Institute (VCHRI) • British Columbia Institute of Technology (BCIT) School of Health Sciences 2. Neurosciences, including mental health and addiction • Brain Research Centre, VCHRI • International Collaboration On (Spinal Cord) Repair Discoveries (ICORD) VCHRI • Down Syndrome Research Foundation • B.C. Mental Health and Addictions Research Institute (BCMHARI) • Centre for Addictions Research of B.C. • Centre for Applied Research in Mental Health & Addiction (CARMHA) 3. Cancer • B.C. Cancer Research Centre, BCCA • Functional Imaging Program (FIP), BCCA • The Vancouver Prostate Centre including theTranslational Research Initiative for Accelerated Discovery and Development (PC-TRIADD), VCHRI • Finlandia Natural Pharmacy • InspireHealth 4. Infectious diseases • B.C. Centre for Disease Control • B.C. Centre for Excellence in HIV/AIDS • CIHR Canadian HIV Trials Network 5. Cardiovascular • Healthy Heart Centre (HHC), St Paul’s Hospital • The James Hogg iCAPTURE Centre for Cardiovascular and Pulmonary Research (Heart Lung Institute) 6. Pulmonary • Centre for Respiratory & Critical Care Medicine, VCHRI • Pacific Lung Health Centre 7. Autoimmune diseases • Arthritis Research Centre of Canada, VGH • Immunity & Infection Research Centre, VCHRI • Prevention of Organ Failure Centre of Excellence (PROOF)
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