A Patient's Perspective: Participating in the VCRC Patient Longitudinal Study 

By Jane Dion, March 2006

As a long time patient of Dr. Peter Merkel, who is the principal investigator of the Vasculitis Clinical Research Consortium (VCRC), and as one of the founders of the Churg Strauss Syndrome Association, I was given an opportunity to become one of the first participants in the VCRC Churg Strauss Syndrome (CSS) Longitudinal study.  This is my experience.

I registered for the VCRC contact registry in February 2006. I had procrastinated about registering because I thought it would be a long, involved process. In actuality it took all of two minutes to answer the questions on the contact registry. I was surprised at how easy it was!

Now patients may also register by mail or by calling a toll free number (866-313-9879).

I was contacted by letter in April 2006 and told that I had an opportunity to participate in a CSS longitudinal study.  When I agreed to participate in the study, I was sent pages of detailed information about every aspect of the study as well as permission forms. The informational packet made for interesting reading and was presented in non technical terms that made it easy to understand.    

The first visit took place at the BU General Clinical Research Center. Since BU Medical Center is a massive facility, I was glad to be met by Ashley Leavitt, Clinical Research Coordinator, who led me to the Research Center.

I met with Dr. Merkel on this first visit. He took a detailed medical history and examined me thoroughly. He worked with me to complete several questionnaires. He also gave me details about my role in the study and encouraged questions. I then gave blood and urine for testing. The first visit took about two hours but as I was fascinated by the whole experience the time passed quickly.  The second visit took 10 minutes as it was only a lab visit.

Dr. Merkel or an associate will see me every third visit for a full clinical work up including a physical examination, a history and labs. During the first year I will return to BU Medical Center on a monthly basis for lab work as well.* After that, I will return every three months. If my disease flares, I will be seen more often. The Research Center at BU Medical Center is a comfortable and friendly place. The nurses are experienced, gentle and considerate. Once, when it was lunchtime, I was offered a complimentary meal.

After each visit I was sent a check for $25 to help pay for gas and parking. Although my disease is mostly well controlled with medication, I often hear from people who are struggling because their diagnosis was delayed, or because their disease is resistant to standard treatment. As one of the “luckier” patients with CSS, I feel an obligation to do what I can to advance an understanding of this disease. In addition, I realize that advances in understanding one of the vasculitic diseases may bring greater knowledge of others.

Being in the VCRC longitudinal study feels empowering to me as I feel that I am actively doing something that might eventually help others with vasculitis. 

* April 2007 - Protocol has changed to visits every three months.

To learn more:

Vasculitis Clinical Research Consortium

http://rarediseasesnetwork.org/vcrc

Toll Free: 866-313-9879

Boston University School of Medicine

715 Albany Street, E533

Boston, MA 02118-3294

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