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Research

HiRO Research

The HiRO research program manages national and international research projects. HiRO researchers and clinicians are world leaders in IHR conditions and partner internationally to share their expertise to discover the best care and treatments for IHR conditions.
IHR conditions are rare, and can cause life-threatening cardiac events. Sharing research ideas and clinical information will speed the discovery of better diagnostics and treatment. HiRO patients and families are part of the research team so that the research results are pertinent to their needs. Partnerships in research are the key to generating new knowledge and innovative care.
HiRO researchers have successfully competed for grant funding from the Canadian Institutes of Health Research (CIHR), Heart and Stroke Canada, and the Cardiac Arrhythmia Network of Canada (CANet).
Research is costly. The gaps in HiRO research funding are met by the generous philanthropy of HiRO donors.
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Participating in HiRO Research

Research coordinators are available at HiRO recruiting clinics across Canada to discuss current research opportunities with patients and families. A list of research recruiting centres can be found from the “See an Expert” tab on the website homepage. For help finding a local recruiting clinic please contact:

Brianna Davies MSc, CGC, National Research Manager
bdavies@providencehealth.bc.ca
tel. 604.682.2344 ext. 66863
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Accessing HiRO Data

Current HiRO Investigators and Research Professionals can access the HiRO research database using their PDG login information.

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Collaborations & Data Requests

Interested in working with HiRO investigators? The Hearts in Rhythm Organization works nationally and internationally developing projects to examine the data and bio samples donated by HiRO research participants. Please contact the custodian or HiRO research data and biosamples, Dr. Andrew Krahn. Dr. Krahn can be reached through Project Manager, Karen Gibbs. See below for contact details

Karen Gibbs RN CCRP , National Project Manager
kgibbs@providencehealth.bc.ca

tel. 604.682.2344 ext 63260

Regulations

Our research is guided by the principles outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2). This is a joint policy between Canada’s federal research agencies. This policy forms the framework to promote the ethical conduct of research.

Why Healthcare Research is important

Excellence in patient care is achieved through health research. Without researching the best ways to diagnose and treat conditions, healthcare providers will not have the evidence and knowledge needed to guide patient care.

The Hearts In Rhythm Organization (HiRO) research team is dedicated to helping patients live healthy lives without fear of a life threatening cardiac event. With patients as part of our research team we are looking at the most effective ways to diagnose inherited heart rhythm conditions (IHRs), treat them, and determine the risk of sudden cardiac arrest or death.

HiRO research is closely integrated with clinical care. The questions asked in the clinic while caring for patients are most often the first stage of our research questions. Inherited heart rhythm conditions are rare. To understand a rare condition, it is important to share information and cases with other experts. HiRO coordinates national and international research to gather information and experiences from patients, care givers, health care providers, and scientists.

HiRO has set the research stage for studying IHRC’s and sudden unexplained death (SUD) in Canada by leading the largest data registry on sudden unexplained cardiac death survivors and family members in the world. Known as CASPER (Cardiac Arrest Survivors with Preserved Ejection Fraction Registry), the work began in 2004 and together heart rhythm clinicians have gathered more than 1000 cases of SUD. CASPER collects data and matching blood samples from willing participants across Canada so that the information can be shared with the leading IHRCs researchers in Canada as well as internationally.

CASPER’s success at providing answers to sudden death cases in more than 50% of the cases has provided guidelines for clinical testing and care for patients and families affected by SUD.

HiRO’s research leaders are world renowned experts in the care and treatment of patients and families affected by inherited heart rhythm conditions. Their research goals are to improve their understanding of all rare inherited conditions affecting the heart’s rhythm.

HiRO builds on the success of the CASPER project to lead two other national data registries and bio banks, that are more specific to a known genetic heart rhythm condition:

1. Arrhythmogenic Right Ventricular Cardiomyopathy
2. Long QT Syndrome.

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