Network offers care but wrestles with security

The experience of a Georgetown University group in setting up an imaging network to support treatment of a rare neurologic disease illustrates the potential and the pitfalls of distributed imaging strategies in improving patient care.

Adrenoleukodystrophy (ALD) is a rare genetic disorder that affects the white matter, adrenal cortex, and testes in boys before the age of 10. The rarity of ALD makes it difficult for physicians to develop expertise in treatment, so researchers proposed sharing imaging data via a virtual private network.

Of 15 potential sites, however, only five actively participated. A key problem was the existence of firewalls in the networks, and some sites refused to create an opening in the firewall.

Using a file transfer protocol to send the images was one possible, but cumbersome, alternative. Other contributing sites set up a DICOM device outside the firewall to transmit images. One site sends them on CD-ROMs.

The determination of treatment for rare diseases requires a collaborative effort, which is possible with a multicenter network, the study concluded. But while such a network is feasible, true seamless integration is not yet possible.