Knowledge translation: where research and real life converge

photo of Lipoprotein(a) Patient Foundation Forum

Photo (left) shows set-up for the 2018 Lipoprotein(a) Patient Foundation Forum. Photo (right) shows artist’s interpretation of Dr. Boffa’s talk on Lp(a).

Knowledge translation (KT) represents the pinnacle of achievement for scientists, allowing the culmination of their research projects. In the simplest terms, KT involves applying research discoveries to situations in real life. In addition, KT not only furthers collaborations with people who can use scientific discoveries (the end users), but also effects impact of the research. For example, a researcher who develops a more durable metal can apply that discovery to real life by collaborating with a metal-making company (the end user) that can sell the product to the construction industry to create more durable buildings (the research impact). In biomedical research, KT usually involves implementing novel discoveries such as medications to improve the health of patients as the end users.

As a biomedical researcher, Dr. Michael Boffa (Dept. of Biochemistry, Western University, London, ON) is accustomed to KT. He studies ways to reverse elevated levels of lipoprotein(a) [Lp(a)] in humans. This entity carries fats and cholesterol in the blood stream, and levels there can be mostly attributed to heredity, rather than factors such as food intake. Elevated Lp(a) exists globally in about 30% of people and has been linked to an increased risk of cardiovascular disease. Yet many health-care providers lack awareness of the risks of Lp(a), and no specific treatment exists.

Dr. Boffa has achieved KT through the Lipoprotein(a) Foundation created by Sandra Tremulis. She experienced first-hand the risks of high Lp(a) levels: as a young, fit, 39-year old athlete, she developed heart disease and almost suffered a heart attack. As a result, she educates researchers, physicians, and patients about Lp(a) and its risks by providing evidence-based information online and in person. She also serves as an advocate for the National Institutes of Health (NIH) working group on Future Research Directions on Lp(a) and Cardiovascular Disease. In fact, she played a key role in convincing the US Centers of Disease Control (CDC) to assign an International Classification of Diseases (ICD) Code for high Lp(a). Such a code now allows for routine diagnosis, treatment, and family screening for elevated Lp(a) before the first symptom appears, and such tests are now covered by medical insurance.

Through the Lipoprotein(a) Foundation, Dr. Boffa experienced KT that has profoundly changed the way he looks at his research. He attended the Foundation’s Patient Forum in Redwood, CA on 15 Sept 2018. This Forum, called the Journey to Hope, featured about 10 patients who have elevated Lp(a) levels. This first-ever event provided to patients the latest information about this complex particle and an opportunity to ask questions and give feedback on their needs. Patients described their experiences with high Lp(a) levels: day-to-day living, health-care visits, fears, and concerns. And this is where KT comes in. As a member of the Foundation’s Scientific Advisory Board and as a Lp(a) researcher, Dr. Boffa explained the research behind this fascinating particle, as well as current and future options for decreasing its levels. Here, he translated to end users his knowledge of and research into Lp(a), and those end users embody patients with elevated Lp(a).

Dr. Boffa attended the Forum because he wanted to tell the story behind Lp(a), inspire the patients, allow them to understand their health, and contribute to Sandra’s efforts in raising awareness about this complex particle – all features of KT. Attendance at the Forum represented an honour and a privilege for him; it allowed him to meet people who live with elevated Lp(a) levels and may have had cardiovascular symptoms. The Forum gave him a real-life perspective to his research and reminded him about the genuine reason behind it, namely to help patients. In addition, he was inspired and humbled by those who wanted to learn about their condition and improve their health. As a result, Dr. Boffa will definitely do things differently in his research: he gained motivation, perspective, and hope for its positive impact.

Dr. Boffa sees a bright future for Lp(a) research. This enigmatic particle represents the single most prevalent genetic risk factor for cardiovascular disease. So far, no direct evidence exists to show that decreases in Lp(a) stop such disease. However, Akcea Therapeutics and Ionis Pharmaceuticals recently funded a phase II clinical trial using a drug that decreases Lp(a) levels in patients with cardiovascular disease. Results from that trial were reported at the American Heart Association Conference in Nov 2018. Soon, a phase III outcomes trial will definitively test if elevated Lp(a) represents a causal risk factor for cardiovascular disease; high Lp(a) levels will be lowered to see if cardiovascular events such as heart attacks and strokes can be prevented.

And the most profound reason for Dr. Boffa to research Lp(a) and implement KT? He too has high Lp(a) levels – what an unexpected convergence of research and real life!

© Lynn Weir 2018

 Funding for this knowledge translation research was provided by The Lipoprotein(a) Foundation. EIN:46-30224812, The Lipoprotein(a) Foundation is a non-profit, 501(c)(3) patient advocacy organization.