Survey Says

If you visited MSDF within the past few weeks, you may have been presented with a brief survey. We wanted to learn some things about our readers, and we thank all 831 of you who responded. We hope it wasn’t too annoying or intrusive.

MSDF was designed for multiple sclerosis researchers and clinicians, and the biggest surprise was that people with MS made up the largest single category of visitors, followed by caregivers, family, and friends of people with MS. Perhaps we shouldn’t have been surprised by this. As our friends at iConquerMS have demonstrated, people with MS are in the vanguard of empowered patients who demand detailed, accurate, and impartial information about their conditions in order to take control of their own health.

Important disclaimers: This survey was not scientific and not randomized. People visiting msdiscovery.org could choose to complete the survey, or they could bypass it entirely. They could answer all the questions or any subset. They could indicate membership in a single category or in multiple categories. And there is no way to ensure that people were telling the truth.

Since people could choose multiple categories, it’s not quite kosher to add up the patients and the caregivers/friends/family and compare them with the sum of the professional categories. An individual could indicate that she was a physician, a research scientist, and a person with MS, for example. However, when we do sum the categories we see that roughly equal numbers of people fall into professional and “civilian” categories.

Some of the most interesting survey results came from the 446 free-form answers to the question, “Why are you visiting the Multiple Sclerosis Discovery Forum today?” The word cloud below shows that the most common words in those answers were MS, Information, and Research.

Here is a small sample of the responses:

• Dealing with the diagnosis as best as I can. Thank you.
• I am looking for information to help me understand MS and find the best treatment and care for my fiancé who was recently diagnosed.
• Learning about role of complement in MS.
• Looking at companies researching NMO.
• I'm forever curious. My partner who also has been diagnosed has gone through ten years of painful daily injections, now takes pills resulting in a disease under control. Unfathomable when I was diagnosed 35 years ago. Medical science has progressed at an incredible pace!
• Keep on top of research.
• To stay up-to-date on recent developments in the field.
• Research into OCT appearance and ganglion cell layer appearance on OCT in optic disc drusen and MS.
• Looking for evidence for discontinuation of "disease modifying treatments" in MS.
• For intelligent information.

Clearly, our visitors are coming to the right place!

Key open questions

• What can we do to keep MSDF useful for all of our readers, including researchers, clinicians, patients, and their loved ones?