Real-time therapy for rare diseases becomes possible with next-generation Internet

One of the goals of the Next Generation Internet (NGI) initiative is to connect universities and national labs with high-speed networks 100 to 1000 times faster than today's Internet. NGI is already being tested as a tool for real-time therapy evaluation for rare diseases.

Results of a John Hopkins study show that evaluation of therapies for adrenoleukodystrophy (ALD) can be improved by establishing a network for transmitting MRI data using NGI technologies.

Standard Internet results indicate that performance is affected by bandwidth limitation and constrained by network traffic, inhibiting standard Internet usage as a reliable real-time therapy evaluation tool.

An ALD-MRI network, which uses the DICOM standard to move images between participating sites, accepts MRI images from one foreign and five domestic sites and stores them in a central clinical database located at the Kennedy Krieger Institute at Johns Hopkins University (KKI-JHU), where several ALD-trained physicians have immediate remote access to the images via a secure Internet connection.

ALD, a rare disease appearing in small numbers at any one institution, often forces patients to travel long distances to have MRI exams done and wait for days or weeks for the results. The small number of ALD-trained physicians also results in MRI studies being mailed long distances for evaluation. Brain MRI permits early detection of nervous system damage and is a sensitive indicator of disease progression in individual patients.

"We have shown that the preliminary use of the NGI can reduce the transmission times of the MRI images dramatically," said Mary Lou Ingeholm, systems manager at Georgetown University's Imaging Science and Information Systems Center, the network integrator on the project. "The use of the Internet may be acceptable for a store-and-forward application where all studies can be preloaded onto a workstation, but it doesn't address the need for fast review and the real-time request of previous studies."

The ALD-trained physician needs the faster performance of the NGI to effectively use the clinical multicenter database for therapy evaluation, Ingeholm said.

The NGI allows the physician to review the MRI exam while the patient is still at the imaging site, as well as to request previous studies from the archive while reviewing the latest exam.

"It's very important for us to diagnose early cerebral involvement," said Dr. Florian Eichler, a neurology fellow at Kennedy. "The only known therapy that can halt cerebral involvement is bone marrow transplantation, which is performed at the University of Minnesota. We've established the Internet 2 connection to Minnesota so patients who get transplanted there can have rapid evaluation before the transplant through this connection that transmits these MRI images."

Bone marrow transplantation has a mortality rate of about 20%, Eichler said, so it's essential to transplant only patients diagnosed with cerebral progression.