I was diagnosed with multiple sclerosis (MS) when I was 25 years old. At the time, I was an ICU nurse and a competitive athlete. Then, all of a sudden, I started losing sensation in my feet and in my legs. The diagnosis of MS wasn’t just shocking, it was a threat to the life that I had built and the future I had always envisioned for myself.

I couldn’t just go home, take my medicine, and wait for someone else to find a solution. Instead, I decided to take charge and be a part of creating a better future for myself. In addition to becoming a nurse who treats patients with MS, I got involved in research. I volunteered to be a participant in clinical studies, I advocated for increased research funding on Capitol Hill, and I became a part of iConquerMS, one of the patient-powered research networks in PCORnet, PCORI’s National Patient-Centered Clinical Research Network.

PCORnet’s 21 patient-powered research networks help researchers and patients collaborate.

PCORnet’s 21 patient-powered research networks help researchers and patients collaborate. Taken together, these networks reach tens of thousands of patients who are sharing data from their own lives and telling researchers what issues matter most to them. This collaboration cuts the time and money it takes to run clinical studies and ensures we’re putting our efforts into the projects that are going to have the greatest impact. It makes so much sense. I’m surprised we haven't been doing research this way all along.

PCORI is already funding studies that have come out of iConquerMS. One study is comparing disease-modifying therapies, considering their effectiveness and safety, while also taking into account the severity of side effects for patients. Another is looking at how to treat fatigue, which is one of the most crippling side effects of MS and one for which we have no effective treatments.

After I was diagnosed, I quickly realized that doctors are not the only experts on disease. Patients and their caregivers know just as much, if not more. Right now, we need better treatments, we need to understand what causes MS, and we need to work towards a cure. The only way of doing that is for everybody to work together.

Stephanie Buxhoeveden, MSCN, MSN, FNP-BC, a nurse practitioner at Neurology Associates of Fredericksburg, Virginia, specializes in the care of people living with multiple sclerosis (MS) and other complex neurological conditions. She is also involved with iConquerMS, the National MS Society, and Can Do MS. Buxhoeveden, who was diagnosed with MS at age 25, works to increase awareness, lobbies for research funding, and advocates legislation at state and national levels.

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