Research Coordinator Patty Conlon Shares Insight Into HD Clinical Trials
Recently, my mother-in-law invited her daughter, Jill, to be part of a Zoom call with a Huntington’s disease (HD) support group she belongs to. One of the guest speakers was Patty Conlon, a clinical research coordinator at the University of Pittsburgh Medical Center’s (UPMC) Department of Neurology.
Conlon shared with the group updates on recent research and a revamped observational study website called Enroll HD, which has been actively recruiting study participants since 2013.
Jill, who is gene-positive for HD, found Conlon to be wise and insightful. In this column, I wanted to be both inspirational and informative, so I reached out to Conlon and asked about topics I hope will be helpful for families dealing with HD. Excerpts, lightly edited for style, follow.
What role do you have at UPMC’s Neurology Department?
The UPMC Department of Neurology is one of 55 clinics in the U.S. designated as a Huntington’s Disease Society of America (HDSA) Center of Excellence. I first joined the Center of Excellence staff as their occupational therapist in 2015.
Not long after that, I was drawn to the research coordinator position, and I wanted to be directly involved in making the research program offered in Pittsburgh more active and comprehensive. I continue to fill both roles in my position, but most of my time is devoted to research.
During a recent HD support group meeting, you spoke about a program called Enroll-HD. What is the purpose of it?
Enroll-HD is a global, long-term, observational study that looks at the effects of Huntington’s disease as people age. It is open to any family member affected by HD, whether they know their gene status or not. To date, this study has enrolled over 20,000 subjects from Huntington’s families worldwide.
It acts as a database to kick-start other research studies by gathering baseline and follow-up data and blood samples, which helps to identify people who are interested in research studies and who fit the criteria each study is looking for.
I can say personally that when recruiting for incoming studies, my first place to look is in our local Enroll-HD database.
What is the demographic that Enroll-HD looks for?
Anyone from an HD family can be involved. They look to enroll participants, whether symptomatic or not, whether gene-tested or not, and whether living at risk or having tested negative. The study has been especially focused lately on younger, at-risk subjects, tested or not, and early or pre-manifest in symptoms.
There is also a role in research for the caregivers of those affected by Huntington’s disease. They also can enroll in the study and answer specific questionnaires about the effect that caring for a person with HD has had on their own health and well-being.
You are a study coordinator for clinical trials. How can folks find clinical trials they may be eligible for?
There are a number of resources online to notify people of research studies they might be eligible to participate in. The HDSA.org site has a link for HD Trialfinder, which is a clinical trial-matching service specifically for the HD community. This is a wonderful resource to register with if you want to be kept in the loop about upcoming trials being offered.
Why are some people chosen for certain trials and others aren’t?
As with many research programs, each clinical trial starts out with a hypothesis, or a question they are looking to answer. In order to study this question, those who run a trial try to line up a number of subjects who are similar in their disease stages, symptoms, other medications they are currently taking or have previously taken, and medical conditions that might affect their performance or safety in the trial. This way, the study is structured to say with fair confidence that any differences between the treatment group and placebo group are due to the medication being studied.
What gives you hope for the future in terms of clinical trials?
The current rate of new studies being proposed for the treatment of HD is higher in the last five years than ever before. With each study, there is a wealth of knowledge to be gained, not only in what is working, but also what is not working. I’m hopeful that information will lead us to a treatment that will eliminate the threat of HD in our lifetime.
The course of Huntington’s disease now is already remarkably different than it was years ago. Symptom management has become more reliable, and there are many more treatment options for individualized care. I enjoy being on the front line of that battle. Our families and future generations are counting on what we accomplish today.
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