Clinical Trials and Preclinical Infrastructure Asset Map - Life Sciences

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254 BRITISH COLUMBIA APPENDIX 8. PROVINCIAL AND NATIONAL PATIENT REGISTRIES INVOLVING B.C. INVESTIGATORS Name of Registry/ URL B.C. Contact Description Cancer B.C. Cancer Registry, BCCA (www.bccancer.bc.ca/HPI/CancerStatistics/ default.htm#bccanreg) National Marrow Donor Program (www. marrow.org) Cardiovascular/ Cardiology B.C. Cardiac Registry (www.phsa.ca/NR/ rdonlyres/3B51D4FB-5384-4F26-AA50-7- B29443DB48B/27283/Cardiac_Strategic_ Plan_Updated_final.pdf) Sharon Tamaro, Director stamaro@bccrc.ca Tel: 604 675 8070 Clay Smith. Director Leukemia/BMT Program of B.C. clsmith@bccancer.bc.ca Tel: 604-875-4863 Ron Carere. Regional Director of the Cardiac Program for VCH. rcarere@providencehealth.bc.ca Tel: 604 806-9139 BRIEF PCI Registry (No URL) Graham Wong, Coronary Care Unit, Vancouver General Hospital gcwong@telus.net Tel: 604-875-5735 Carotid Registry (No URL) Jackie Saw, Cardiology, Vancouver General Hospital jsaw@interchange.ubc.ca Tel: 604 875-5547 Has been monitoring the impact of cancer in the province since 1969. Registry tracks cancer incidence, diagnosis, mortality, gender and age to determine the trend of cancer B.C. as different patterns are seen in different age groups and sometimes for the same cancer in different sexes. This information identifies the most deadly cancer diseases and targets high risk groups. The Leukemia/BMT Program of B.C. contributes to this North American registry. Operated by B.C. Cardiac Registry and Evaluation Services at the PHSA to record information about patients going through the cardiac care system. The BCCR database contains information such as demographics, nature of cardiac surgeries, as well as diagnostic and interventional catheterization procedures. This is one of the most comprehensive medical databases in Canada; it records over 30,000 diagnostic procedures per year and contains more than 10 years of high-quality cardiac catheterization and adult open heart surgery data. The data is gathered from all hospitals with catheterization labs in B.C. It contains data covering 60 cardiologists, 17 cardiac surgeons and 6 sites (www.coe.ubc.ca/industry/projects/2005/ cardiac_registry.pdf). A localized database of inflammatory markers prior to and post uncomplicated percutaneous coronary intervention (PCI) (a.k.a. angioplasty) followed by a brief infusion of eptifibatide. A single-centre prospective carotid intervention registry on carotid stenting in symptomatic coronary disease. Contains information on clinical, procedural, lesion and other characteristics.
CLINICAL TRIALS AND PRECLINICAL INFRASTRUCTURE ASSET MAP 255 Name of Registry/ URL B.C. Contact Description Fibro Muscular Dysplasia (FMD) Registry (No URL) CNS Canadian Epilepsy Database and Registry (CEDAR) (No URL; see www.ncbi.nlm.nih.gov/ pubmed/9827243) Canadian Pediatric Ischemic Stroke Registry (No URL; see www.cfri.ca/our_research/ researchers/search_researchers/researcher_ detail.aspID=387) Rick Hansen Spinal Cord Injury Registry (www.rickhansenregistry.org) Christopher Buller, Interventional Cardiologist, Vancouver General & St. Paul’s Hospitals janet.crocombe@vch.ca (administrator) Tel: 604 875-4111 x 69821 Mary Connolly, Head of Division of Pediatric Neurology, BCCH. mconnolly@cw.bc.ca Tel: 604-875-2000 x 3512. Contact: Bruce Bjornson, B.C. Children’s Hospital (BCCH) bbjornson@cw.bc.ca Tel: 604-875-2345 x 3510 Lvl 6, 818 West 10th Avenue Vancouver, B.C., V5Z 1M9 Tel: 604-707-2100 Infectious Diseases Canadian Perinatal HIV Database John (Jack) Forbes, BCCH jforbes@cw.bc.ca Tel: 604-875-2212 Pulmonary Asthma Registry at The Lung Centre, VGH Mark FitzGerald, Director of the Centre for Clinical Epidemiology and Evaluation markf@interchange.ubc.ca Tel: 604-875-4565 Localized registry containing demographic, clinical, coronary angiographic and other information on patients with Coronary Fibro Muscular Dysplasia. A comprehensive multicentre epilepsy database, developed to study the impact of medical, psychological, social, demographic and other factors on epilepsy in Canada. It can also be used locally in the clinic for office record keeping, automated printout of a referral letter or graphing seizures and other data over time. The data in CEDAR are similar to those found in the patient’s chart. There are 20 participating centres across Canada which have entered data on over 8,000 adult and pediatric epilepsy patients. The information is available for research purposes to centres entering data as well as to academic researchers, the pharmaceutical industry and government agencies. The purpose of this unique project is to: • Collect comprehensive population-based data on pediatric (up to 18 yrs old) ischemic stroke (arterial ischemic stroke and sinus thrombosis) • Provide information, including prospective update of chart information, for randomized clinical trials testing treatments for childhood stroke. The recording period is January 1, 1992 to present and 16 pediatric tertiary care centres participate. Two hundred and twenty patients with stroke or cerebrovascular disease (131 AIS, 32 SVT, 57 other cerebrovascular diseases) have been identified at BCCH. National database based in Vancouver that tracks specific outcome measures for people with traumatic forms of SCI and provides invaluable research data. National surveillance program of HIV exposed and infected children, which is reported annually by the Public Health Agency of Canada (see www.cfri.ca/our_research/researchers/ search_researchers/researcher_detail.aspID=41). Localized registry of asthma patients.
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