Good News: Bringing Health Research to Island Life F ALL 2 0 14 Not displaying properly? View online. Welcome to the fall edition of Good News, brought to you by Island Health’s Research team! Inside This Issue: - Local Research in Action: Results that are Improving Care - Patient Research Workshop: You Asked… - The Researcher Next Door: Dr. Steve Burnett - People Power: Research Needs You! - Health Research Opportunities Local Research in Action: Results that are Improving Health and Care “Selfies” and stroke symptoms In June of this year, the Times Colonist featured a story about a woman who recorded her stroke symptoms on her smartphone. Stacey Yepes wanted to show doctors what was happening to her in order to get a diagnosis, and testing confirmed that she had suffered a mild stroke or TIA (transient ischemic attack). It’s a good thing Stacey had a video “selfie”: it’s not uncommon for Emergency Departments to misdiagnose mild strokes. Their symptoms mimic 1 many other conditions, including migraines, and there is currently no way to distinguish the mimics from the real strokes without expensive and timeconsuming imaging. Mild strokes can be forerunners of full-blown strokes in 1 out of every 10 cases, but if diagnosed in time, only 1 in 50 will progress to full stroke. How can we separate the true mild strokes from the mimics in time to provide patients with the right treatment and prevent stroke? Enter the SpecTRA Stroke Project at Island Health Island Health is uniquely positioned to solve this problem. In 2012, Dr. Andrew Penn—a stroke neurologist and medical lead at Victoria General Hospital— received a four-year, $9.6 million dollar research contract to develop a fast and effective tool that will help doctors diagnose mild strokes. Island Health’s Stroke Rapid Assessment Unit holds the largest single-site database of prospective, TIA, mild stroke, and mimic patients in the world, with over 14,000 patients. Using the stories that these patients tell to describe their symptoms, Dr. Penn and his team have isolated patterns and keywords that they will use to predict whether someone has had a mild stroke. The next step in their research is to look for protein patterns in their patients’ blood. Combining these “selfie” stories with a protein blood test, the team will develop a tool for doctors to distinguish mild strokes from other conditions early enough to treat them. Treating Patients Right Once the test and the tool have been developed, says Dr. Penn, “We can prevent 80 strokes every year on Vancouver Island – 4,000 across Canada – through early diagnosis that allows us to give the right patient the right treatment at the right time.” Reducing stroke burden and improving care are all part of a day’s work for Dr. Penn and his team! 2 Seated left to right: Dr. Martin Wale (Deputy Chief Medical Officer and Executive Director, Medical Affairs and Research); Dr. Andrew Penn; Dr. Gordon Hoag (Medical Director, Laboratory Medicine) and the SpecTRA team. Not pictured: Kristine Votova, Project Manager. Photo courtesy of Genome Canada. Patient Research Workshop: You Asked… … and we’re doing our best to find answers! This spring, we hosted a workshop to identify common concerns and questions about dementia care, Multiple Sclerosis, Parkinson’s, early psychosis and schizophrenia, and stroke. We collected questions of importance to patients and their caregivers, and the research team has taken the top questions forward to see if any of them might lead to new, patient-generated research. Here’s an example of what we’re working on: You asked: Should there be a study that compares marijuana to current medications used to treat spasticity in people with Multiple Sclerosis? What we’ve learned: The Research team consulted with neurologist Dr. Kristen Attwell-Pope and Dr. Mohamed Gheis, and identified a recent systematic review on the efficacy and safety of using medical marijuana to treat symptoms of MS, epilepsy, and movement disorders (see Barbara S. Koppel, John C.M. Brust, Terry Fife, et al. Neurology 2014; 82; 1556-1563). This review found that treatment with marijuana taken orally (through the mouth) and THC (the main active ingredient in marijuana) was probably effective in treating spasticity in MS patients. In addition, it was probably effective in treating central pain or painful spasms (including spasticity-related pain). It was uncertain whether smoked marijuana was effective in reducing pain. The authors conclude that marijuana should be studied further to learn more about its ability to affect spasticity and that it should be prescribed when evidence is available. They suggest that the recent decriminalization of marijuana should “encourage researchers to continue seeking answers to the benefits of marijuana use in patients who have neurological illnesses.” 3 What’s Next: Island Health has partnered with the University of Victoria and the Salt Spring Island Economic Development Corporation to discuss the potential for this research and to explore funding opportunities for a clinical trial that compares the effectiveness of medical marijuana to existing approved medications for spasticity in MS patients. Stay tuned for future updates as we pursue collaboration, funding, and results to see if research can answer this question for you! The Researcher Next Door: Dr. Steve Burnett Q: Tell us about your current research. I’m an orthopaedic surgeon at ReBalance MD, a musculoskeletal clinic in Victoria. My research is focused on clinical outcomes studies in hip- and knee-replacement surgery, which are two of the most common surgeries performed by orthopedic surgeons. Q: How does evidence from your research impact the health and wellbeing of the Island community? Clinical research is important because it validates the outcomes of the surgeries we’re doing locally, and confirms that our outcomes are on par with the rest of Canada and North America. With this information in hand, Vancouver Island patients can be assured that they don’t have to leave the island to have access to good surgery. Q: Do you have any advice or tips on how to avoid orthopedic health issues? I would encourage people to maintain an active lifestyle, whether it’s low-impact walking, swimming, or cycling, or high-impact running and aerobics. I would also advise people that while musculoskeletal complaints are common, they shouldn’t be ignored! ReBalance MD is creating a complete musculoskeletal wellness program in Victoria, using a multidisciplinary approach to address these issues. 4 Q: What’s your favourite thing about living here? The weather! Especially this past summer. I love being able to doing things with my family, including outdoor activities. It’s a great place to live. People Power: Research Needs You! Did you know that over half of clinical research trials in North America are unable to enroll enough participants? These trials may close, move to other locations, or discover results that aren’t relevant to our unique population. In order to support local research study opportunities, we need you! Today’s research ensures a healthier tomorrow for study participants, their families, and Island communities. In order to expand and support local study opportunities, in 2013 Island Health launched the Permission to Contact (PTC) for Research program to connect researchers with people who want to become partners in health research and in their own care. The Permission to Contact program creates a registry of people who would like to learn more about current study opportunities in the region. What are the goals of the PTC program? - Patients as research partners: we want to involve patients in research aimed at identifying ways to improve health care and its delivery - Research-readiness: we aim to enhance researchers’ abilities to identify potential study participants - Staff engagement: we seek to engage health authority staff in research activities to create a culture of learning that will enhance care and improve practice. 5 How does it work? When entering an Island Health care site, patients are asked for their permission to: - Collect and store some of their personal data such as name and contact information; - Access their Island Health record to screen them for study eligibility; and - Contact them with information on research studies for which they may be eligible. Can I participate? Yes! Over 5,000 people across the Vancouver Island region have already signed up for the PTC program – if you’d like more information, please contact Rebecca Barnes, Research Engagement and Outreach Project Manager (rebecca.barnes@viha.ca) or 250-519-7700 x12718. Health Research Opportunities Vancouver Island has a vibrant health research community that includes Island Health, our Island universities, and community-based research organizations. Victoria has 10 clinical sites comprised of specialists, GPs, research nurses, and coordinators, collectively known as the Island Clinical Research Collaborative. To learn more about these sites, see this factsheet. Below, you’ll find further details about some of the studies currently seeking participants in the region. Type 2 Diabetes Area: Diabetes Purpose: This study will assess the use of metformin in women with Type 2 Diabetes in pregnancy. Eligibility: Individuals must be pregnant and between 6 and 22 weeks gestation, diagnosed with Type 2 Diabetes, currently taking insulin Contact: Karen Coles, Study Coordinator, 250519-7700 extension 13630 or Karen.coles@viha.ca 6 Mental Health SelfManagement & Treatment Adherence Area: Mental Health Purpose: This study will explore the effect of receiving information about causes of mental illness for people diagnosed with bipolar disorder, schizophrenia and schizoaffective disorder. This study will not offer genetic testing, and does not seek to determine the causes of mental illness. Eligibility: We are looking for men and women who are: -interested in learning more about the causes of mental illness -fluent in English -At least 19 years old -can provide written consent -have one of the following diagnoses: 1) Schizophrenia 2) Schizoaffective disorder 3) Bipolar Disorder This study is being conducted at the Eric Martin Pavilion, Victoria Mental Health Centre. The study will involve 2 in-person visits, and completing questionnaires at two different time points at home. Participants will receive $10 for each completed interview and questionnaire, for a total of $40. Contact: Please contact Rolan by phone at 250-519-5300 local13738 or via email to: rolan.batallones@ubc.ca Family Physical Activity Study Area: Physical Activity Purpose: This study will examine whether different strategies help to promote familybased physical activity. Eligibility: Families living in Victoria with at least one children between the ages of 6 and 7 12 who is getting less than 60 minutes of moderate-to-vigorous physical activity each day. Same-sex couples are equally encouraged to participate. Contact: Alison Quinlan, bml@uvic.ca or at 250-472-5288 Note: This research study has received ethical approval from the University of Victoria’s Research Ethics Board. The Research Ethics Board of Vancouver Island Health Authority has not participated in the ethical approval of this research study, and recommends that you direct any questions or concerns about the study to ethics@uvic.ca or 250-472-4545. New Parent Physical Activity Study Area: Physical Activity Purpose: To determine whether or not certain strategies administered immediately post-partum can help to improve physical activity levels among new parents in the first eight months post-partum. Eligibility: Common law or married couples who reside in Victoria, BC and who are expecting their first child or have just had their first child within the past two months. Same-sex couples and surrogate parents are equally encouraged to participate. Contact: Alison Quinlan and/or Shabnam Almasi at bml@uvic.ca or at 250-472-5288 Note: This research study has received ethical approval from the University of Victoria’s Research Ethics Board. The Research Ethics Board of Vancouver Island Health Authority has not participated in the ethical approval of this research study, and recommends that you direct any questions or concerns about the study to ethics@uvic.ca or 250-472-4545. 8 PREVENT study Area: Alzheimer’s Disease Purpose: This study is a research project at the University of Victoria that aims to identify those at risk of memory decline and Alzheimer’s disease by focusing on various lifestyle, health, and biological indicators. Eligibility: If you or someone you know has been physician-diagnosed with Mild Cognitive Impairment or Alzheimer’s disease, please contact the PREVENT Study research office immediately. Contact: PREVENT Study, 250-853-3839 or prevent@uvic.ca Note: This research study has received ethical approval from the University of Victoria’s Research Ethics Board. The Research Ethics Board of Vancouver Island Health Authority has not participated in the ethical approval of this research study, and recommends that you direct any questions or concerns about the study to ethics@uvic.ca or 250-472-4545. High Dose Vitamin D Area: Cancer Purpose: This is a pilot study of safety, tolerability, and treatment benefits of high dose vitamin D supplementation. Eligibility: If you or someone you know has stage four colorectal cancer, please contact InspireHealth for more information. Contact: Study Coordinator, 604-734-7125, or vitDstudy@inspirehealth.ca Note: This research study has received ethical approval from the Western Institutional Review Board. The Research Ethics Board of Vancouver Island Health 9 Authority has not participated in the ethical approval of this research study. If you have any questions or concerns about the study, please call 1-800-562-4789. ASSERT-II study Area: Cardiovascular Purpose: The study aims to implant patients with a continuous electrocardiogram monitor which will scan for undetected atrial fibrillation (AF). The study is sponsored by the Population Health Research Institute. Eligibility: Elderly persons who have certain cardiovascular risk factors, heart enlargement and no history of atrial fibrillation (AF) may be eligible to enroll. Patients who fit this description have a risk of developing AF, which increases stroke risk. Contact: Deborah Parfett, Study Coordinator, 250-595-0400, or dparfett@catrials.org CASPER study Area: Cardiovascular Purpose: The study will help to evaluate the current medical testing strategy for unexplained cardiac arrest (UCA) and compare unexplained cases in the hopes of determining what caused them. The study is sponsored by the Diamond Health Care Centre and Dr. Andrew Krahn. Eligibility: Persons who have experienced an unexplained cardiac arrest (UCA) or are firstdegree relatives of a person who has experienced a UCA may be eligible to enroll. Enrolled patients will have their health records collected and added to the CASPER database, and will be asked to donate a blood sample to the CASPER biobank. Contact: Fritha Munday, Study Coordinator, 250-595-0400, or fmunday@catrials.org 10 GLORIA-AF study Area: Cardiovascular Purpose: The study aims to observe the effectiveness of anticoagulants in patients with atrial fibrillation (AF). The study is sponsored by Boehringer Ingelheim. Eligibility: Persons who have been newly diagnosed with atrial fibrillation (AF) within the last 3 months may be eligible to enroll. Contact: Deborah Parfett, Study Coordinator, 250-595-0400, or dparfett@catrials.org ICY-AVNRT study Area: Cardiovascular Purpose: The study aims to determine the effectiveness of focal cryoablation (freezing) for treating AV node reentrant tachycardia (AVNRT). The study is sponsored by Medtronic. Eligibility: Persons who have been diagnosed with supra-ventricular tachycardia (SVT) and are planning to undergo their first electrophysiology study and cardiac ablation may be eligible to enroll. Contact: Fritha Munday, Study Coordinator, 250-595-0400, or fmunday@catrials.org REFINE-ICD study Area: Cardiovascular Purpose: The study aims to compare the effectiveness of treating patients who have experienced a heart attack (also called an MI or myocardial infarction) with either internal cardiac defibrillator therapy or standard therapy. The study is sponsored by the University of Calgary. Eligibility: Persons who have experienced a heart attack within the last 15 months may be eligible to enroll. Contact: Deborah Parfett, Study Coordinator, 250-595-0400, or dparfett@catrials.org 11 Have you been asked to participate in a clinical trial? Area: All Purpose: The BC Clinical Infrastructure Network is conducting a survey to understand how to improve clinical trial recruitment by addressing participant perspectives. This survey is a chance for people to provide feedback to researchers across BC and Canada. Eligibility: If you have participated in a clinical trial, if you have declined to participate, or if you are the parent of a child who has participated, you are eligible to fill out this survey. Contact: The survey is accessible online at: www.bccrin.ca/survey > Visit our Website > Unsubscribe > Talk to us! Research and Capacity Building Program Memorial Pavilion, Kenning Wing 1 Royal Jubilee Hospital, Victoria V8R 1J8 research@viha.ca / 250-370-8261 12
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