Jenna is a teacher, a mother of two young girls, and a part-time caregiver for her mother who lives with Huntington’s Disease (HD). She has supported the Huntington Society of Canada’s efforts to raise awareness by sharing her family’s HD story with the Canadian community and internationally. In 2018, Jenna became a member of HD-COPE, a coalition for patient engagement that seeks to incorporate the patient-voice in global therapeutic development efforts for HD. Since joining HD-COPE, Jenna has shared the HD community’s experiences and needs with regulators, researchers, pharma and industry professionals. Jenna is also a member of CTO’s College of Lived Experience.
Below, Jenna opens up to Clinical Trials Ontario about her family’s experience with clinical trials.
Can you tell us about your family’s health story and involvement in clinical trials?
In 2012, my mom was officially diagnosed with Huntington’s Disease (HD). HD is a genetic illness in which every child born to a parent with the genetic mutation causing HD has a 50% chance of inheriting the gene. When my mom was diagnosed with this genetic disease, we quickly realized that meant her siblings, her nieces and nephews, her children and her grandchildren were all at risk of inheriting the genetic mutation causing the disease. This changed everything for the future of our family!
Once my mom was open with our extended family about her diagnosis, it prompted a conversation about the genetic nature of this disease and what that meant for us. In order to know whether you carry the mutated gene, a simple blood test will reveal your genetic fate. These open conversations about the genetic nature of HD prompted a few of my family members to get tested. Most of my family members have decided to not undergo genetic testing which is very common in the HD community as there is currently no treatment to slow or stop the progression of the disease. Genetic testing is a very personal decision that can be both overwhelming and stressful and can be made for a variety of reasons (to understand health conditions, family planning, career planning, marriage, etc).
For those of us that have gone ahead and done the genetic testing, it has opened up the window to participate in observational studies and clinical trials. I fortunately do not carry the genetic mutation that causes HD, but I, along with my mother and some of my extended family members, have been able to participate in observational studies and clinical trials.
Why do clinical trials matter to you and your family?
Clinical trials and observational studies are very important to me because HD does not have a cure. Right now, studies show that after the early onset of HD symptoms, people only have between 10 to 30 years of life left. This is startling when you consider the onset of symptoms can begin when people are in their 30s or 40s. The age of onset and lifespan in cases of Juvenile Huntington’s Disease is much lower. Currently, there are treatments to manage the symptoms of HD, but there are no treatments to stop or slow the progression of the disease.
With ongoing breakthroughs in science and research and the current level of financial investment in HD, the clinical trial landscape is rapidly changing and expanding. There has been a major influx of investment in HD research and there are many clinical trials actively recruiting with more coming down the pipeline. As a result, we need members from our global community to take part in clinical trials and observational studies. Unfortunately, if you do not know your genetic status, you cannot participate in clinical trials.
HD is a genetic disease, and we know that individuals who are at risk of carrying the genetic mutation often do not undergo genetic testing. For the HD community this can be problematic. If we are ever going to find a cure or a therapeutic that could slow the progression of the disease, we need people who carry the gene to participate in clinical trials.
What advice would you give to others interested in participating in clinical rials?
Due to the widespread impact it has on my immediate and extended family, I feel as though I have a moral obligation to advocate for people affected by HD. That being said, participating in clinical trials is not something that should be taken lightly. And for those at risk, finding out your genetic status is also something that should be carefully considered. These are serious life choices that need to be well thought-out to determine if they are right for you.
Many of the HD clinical trials are invasive and time consuming. Some now involve lumbar punctures to collect cerebral spinal fluid or to inject a potential therapy into your cerebral spinal fluid. Followed by many appointments over an 18-24 month period to gather further data via cognitive testing, MRIs and blood tests. Participation in these clinical trials needs to be the right fit for you. They are a commitment and are not suitable for everyone. That being said, we need brave, trailblazers to take the first step and participate in clinical trials, otherwise we will never find a cure for HD.
My mom and I view participation in clinical trials and observational studies as critical to the younger generation in our family and the HD community. Due to her age and her stage of HD, my mom will likely not experience the benefits of clinical trials; however, she knows her participation is a value piece of the puzzle and will one day contribute to finding a viable therapeutic for HD. She participates for her children, grandkids, nieces, and nephews, to show them that research is progressing towards a treatment and that she is part of it.
Clinical Trials Ontario can help you navigate clinical trials
Are you thinking of engaging with clinical trials? We have tools and resources that can help. Use our Clinical Trial Finder tool to find open clinical trials in Ontario or across Canada. You can search by disease, location or demographics. Use our educational modules to learn more about what clinical trials are and what you should know before engaging with one.