Clinical Trials and Preclinical Infrastructure Asset Map - Life Sciences
Clinical Trials and Preclinical Infrastructure Asset Map - Life Sciences
Clinical Trials and Preclinical Infrastructure Asset Map - Life Sciences
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BRITISH COLUMBIA<br />
APPENDIX 8. Provincial And National Patient Registries Involving B.C. Investigators (cont’d)<br />
Name of Registry/ URL B.C. Contact Description<br />
Cystic Fibrosis Foundation Patient Data<br />
Registry (no URL)<br />
COPD Registry at The Lung Centre, VGH (No<br />
URL)<br />
Other<br />
B.C. Trauma Registry (www2.<br />
itssti.hc-sc.gc.ca/clf/clfinven-<br />
tory.nsf/idview/030204164816-KC-<br />
KROpenDocument&lang=E)<br />
CORR (Canadian Organ Replacement Register)<br />
Transplant Registry<br />
(http://www.cihi.ca/corr)<br />
Integrated Public Health Information<br />
System (iPHIS)<br />
(www.phac-aspc.gc.ca/php-psp/ciphs-eng.<br />
php#wiphis)<br />
ARCHIVE (International Registry for Childhood<br />
Vasculitis)<br />
N/A Canadian on-line patient data surveillance system (see www.gcdisclosure-divulgationsc.<br />
phac-aspc.gc.ca/phac/pd/pd_grants.nsf/WEBbydetails/4D1B39E580E78B9F8525734000500<br />
2ADOpenDocument&L=E&).<br />
Jeremy Road, Medical Director of the<br />
COPD Clinic<br />
jroad@interchange.ubc.ca<br />
Tel: 604 875-4241<br />
Sharon Kasic, VGH<br />
sharon.kasic@vch.ca<br />
Tel: 604-875-4748<br />
John Gill, Chair, CORR Transplant Registry,<br />
St Paul’s Hospital<br />
jgill@providencehealth.bc.ca<br />
Tel: 604-806-9048<br />
Dilma S<strong>and</strong>rin, iPHIS Program Manager,<br />
BCCDC<br />
Tel: 604-707-2501<br />
David Cabral, BCCH.<br />
dcabral@cw.bc.ca<br />
Tel: 604-875-2437.<br />
Localized registry of COPD patients.<br />
Collects <strong>and</strong> maintains data on all trauma patients admitted to any of the nine trauma receiving<br />
facilities in B.C. The primary purpose is to improve <strong>and</strong> maintain the quality of patient<br />
care. Other purposes of this data source are for epidemiology, research, planning, injury<br />
surveillance; <strong>and</strong> contributing to injury prevention programs.<br />
CORR records, analyzes <strong>and</strong> reports on the level of activity <strong>and</strong> outcomes of vital organ transplantation<br />
<strong>and</strong> renal dialysis activities in Canada. It keeps statistics on transplant numbers,<br />
donor numbers <strong>and</strong> waiting lists.<br />
An automated, integrated, client health record <strong>and</strong> reporting system that supports public<br />
health provider interventions, tracking, follow-up, case management, <strong>and</strong> reporting. iPHIS<br />
includes immunization tracking, communicable disease case management, <strong>and</strong> surveillance<br />
components <strong>and</strong> is designed to be used centrally, providing secure access to one client<br />
record by multiple public health providers <strong>and</strong> programs <strong>and</strong> allowing communicable disease<br />
surveillance <strong>and</strong> immunization information to be shared. Data available for project-specific<br />
research purposes.<br />
US/Canadian registry of children with Wegener’s Granulomatosis <strong>and</strong> related small-medium<br />
vessel chronic vasculitis populated by all pediatric rheumatology centres (see www.vasculitisfoundation.org/registryofchildrenwithWG<strong>and</strong>relatedvasculitides).<br />
PROMIS<br />
(www.bcrenalagency.ca/professionals/<br />
promis/default.htm)<br />
Mirek Piaseczny, B.C. Provincial Renal<br />
Agency<br />
mpiaseczny@bcpra.ubc.ca<br />
Tel: 604-806-8647<br />
Database of all nephrology patients on dialysis, with CKD <strong>and</strong> before/ after transplantation.<br />
Contains all patient records <strong>and</strong> outcomes from B.C.’s 37 renal units. Care providers can access<br />
information about a patient’s medical care, no matter where the care is delivered.