The purpose of the registry is to acquire clinical information and biologic material for cases from all over the world, so that researchers can tease out the incidence, prevalence, and potential contributing factors, Eugene O. Major, Ph.D, chief of the laboratory of molecular medicine and neuroscience at the NINDS, said at the annual meeting of the American Academy of Neurology in New Orleans.
The research may also give rise to diagnostics and therapies for the condition, which has up to 50% mortality in the first few months after diagnosis, according to the NINDS.
PML is caused by the reactivation of infection with the JC virus.It is rare, and is most often seen in HIV-infected individuals, but is also seen in people who are undergoing chronic immunosuppression, as with certain cancers. But the disease has also been on the rise in multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosus due to biologic therapies that appear to reactivate the JC virus. The NINDS estimates that 5% of HIV patients develop PML.
Much of the data in the registry will be collected through a network of cooperating clinical centers. But the registry, which will be web-based, will have several access points for reporting clinicians and a portal for the public as well, Dr. Major said. The public-facing side of the site will connect patients to the NINDS, its lab site, clinicaltrials.gov, and advocacy groups.
Neurologists and other clinicians will enter cases using a form that will give patients a random identifier. There will be space for narratives and for attaching MRI scans and lab results.
There will also be diagnostic criteria posted, which are currently under review by the AAN, Dr. Major said.
The aim is to conduct a pilot study using five academic medical centers and then have the registry publicly available in the fall, he said.