Originally published September 12, 2018. Click here to see an update on the study.
As a member of the BioAgilytix team, I have the opportunity to the support incredible work our organization is doing on a daily basis. Even in Human Resources, I feel a connection to BioAgilytix’s overall mission of bringing innovative biologics to market for the ultimate benefit of the patient. This passion has been inspired by my own journey with a rare disease, Ankylosing Spondylitis (AS), which I was diagnosed with when I was 22. And, it is what led me to take part in a recent non-interventional research project that resulted in a published poster entitled “The Diagnostic Journey of Patients with Ankylosing Spondylitis in the USA”. This project allowed me to put into practice my desire to make a difference in patients’ lives.
My Personal Diagnostic Journey
My diagnostic journey was complicated. Generally, the onset of AS is not thought to occur until early adulthood, and it is believed to be more common in men. AS would not be on the radar of a doctor treating a young girl; however, I had symptoms at age 11. The pain was severe enough that I ended up missing a lot of time at school. Still, doctors had no answers for me. When I was in college at Meredith College, I visited the student health center, and they put me in touch with a rheumatologist at UNC. While this doctor thought I might have AS or another related disease, there was still no definitive diagnosis made.
Finally, at age 22, I was officially diagnosed with AS. However, my insurance company would not pay for the still relatively experimental treatment that I needed to make a meaningful impact on my symptoms. It wasn’t until years later, in 2013, that I was finally approved to use large molecule drugs to treat my condition. My struggle to get an accurate diagnosis and finally to get the treatment I needed has made me passionate about AS research, particularly related to how the disease is recognized and diagnosed. My current doctor, who is very well known in the rheumatology community, was even surprised at my age of onset, which highlights how much there still is left to learn about this chronic disease.
The Research Project
My interest in advocacy led me to participate in a variety of work through a non-profit called the Global Healthy Living Foundation and its CreakyJoints community. This group keeps me in the loop about new projects and research studies, and in early 2017 they asked if I would be interested in participating in a non-interventional research project. I was eager to get involved after hearing that the purpose of the overall research would to be to gain a clearer understanding of how AS is diagnosed and treated in the USA. At the inception of the project, I worked on a team to develop question sets and participation criteria. With the same team, I also helped to distribute the questionnaires to a network of individuals with AS to invite them to participate in the research. Participants completed the survey, submitting answers related to their sociodemographics, the clinical characteristics of their disease, their diagnosis history, and the impact that AS has on their work and relationships.
These answers allowed us to better understand the patient journey to AS diagnosis, from the patient’s perspective. Importantly, it highlighted differences between men and women in initial symptom presentation, misdiagnoses, and time to diagnosis of AS. The findings were eventually summarized into five different scientific posters, and two of our five posters were recently selected for presentation at the Annual European Congress of Rheumatology.
While there is a lot still to be done in the area of AS research, I believe that this research project will help physicians and researchers more fully understand AS symptoms and identify opportunities to more quickly diagnose and appropriately refer patients. It is critical for those involved in treatment to have the knowledge necessary to intervene early so that patients can gain the full benefit of a biologic drug regimen. I am very proud of the work my team and I did; you can learn more about the specific results of the study in the European Medical Journal Rheumatology.
In March 2019, our project was developed into a full manuscript entitled “Real-World Patient Experience on the Path to Diagnosis of Ankylosing Spondylitis”. Click here to access the full document.