In September, Sarah McDaniels joined the cureCADASIL volunteer team and also became a participant in the CADASIL Consortium natural history study. Sarah shared with cureCADASIL what motivated her to participate in the study and her experience during her baseline visit.
Like for many of us, it is challenging to witness or hear about long histories of family members affected by CADASIL. Along with this, I felt a sense of hope when I learned about this study and that I could play a part in the quest to better understand CADASIL so that we can eventually come up with a treatment. To summarize the study process, after reaching out with my interest in the study, the study coordinator and I set up a screening phone call where she gave me more details about the study and asked screening questions to ensure that I qualified for the study. After I was found eligible for the study, we then scheduled my baseline visit at the University of Wisconsin site. I live in that general area, so other than the minimal amount of gas that I spent traveling to and from the university, there was no cost involved for me to participate in the study.
The only preparation that I had to do before the study was fasting for some hours beforehand to prepare for the blood draw. That morning, I was warmly greeted by the research coordinator. We started the day off by reviewing study information and informed consent. We then did the blood draw, which was a smooth process. They then provided me with food to “break the fast”. We then spent quite a bit of time going over my history, including personal, lifestyle, health, and mental health factors. We completed motor and cognitive testing, which consisted of doing various body movement tasks, and game-like tasks on a tablet, respectively. I met with Dr. Jamie Elliott for a neurological exam, consisting of additional motor and sensory testing. There is also an MRI. Much of the day is spent in the lab, and breaks and snacks were available as much as needed. They also provided lunch. Everyone that I interacted with that day was very warm and welcoming and made me feel comfortable.