Industry participation varies among the registries. NARCOMS does not receive money from industry except for use in selected studies, while Patients Like Me sells de-identified patient data to pharmaceutical and device manufacturers. NARCRMS allows its industry sponsors full access to its data, and iConquerMS has also received industry support.
Ms. Halper said that the proliferation of registries should bring MS research closer to that seen with other chronic diseases. While people are being diagnosed more quickly, and more treatments are available, there is still a lot of work to be done, she said. “We don’t know a heck of a lot about MS, and everybody wants to know more. We need data.”
Dr. McBurney concurred. “We’re making an impact on the early relapsing-remitting phase of the disorder, but to date no drugs have been approved for progressive MS – maybe they’re not even the same disease. We still have very little idea which patient is going to benefit from any particular treatment strategy without experiencing troubling side effects,” he said.