Evaluations for International Patients at the Hunter Nelson Sturge-Weber Center

NOVEMBER 21, 2014

Question: Does the Hunter Nelson Sturge-Weber Center provide evaluations for international patients?

Response: Yes! This can be done a few different ways. First of all, the international office at Johns Hopkins will work with the Center and the patient or family to coordinate a multi-disciplinary clinical visit to the center if one is desired and possible. They will help provide translators if needed. The Center will work with the family to make the visit as comprehensive and useful as possible, accessing services at both Johns Hopkins Hospital and the Kennedy Krieger Institute. Alternatively, sometimes parents elect to come by themselves if their child is too young or too medically fragile to make the trip to the United States. Families can still find this sort of visit informational and helpful.

Another possibility is a chart review. In this scenario, the patient or family sends the medical records and any neuroimaging to be reviewed along with a list of their questions to be answered. Dr. Comi provides these written chart reviews for a fee. Where necessary, she addresses questions or reviews neuroimaging with her colleagues in the Center and provides their input as part of the chart review. This is another helpful alternative for families seeking expert consultation, but unable to visit the Sturge-Weber syndrome center.

Finally, soon we expect to have a new option available. We are working on developing the necessary channels and approvals to offer telemedicine consultations to international Sturge-Weber syndrome patients. This approach will enable patients and families to directly video conference with Dr. Comi for a clinical evaluation so that she can see the patient in this manner and address their questions and concerns. A translator will be provided if needed. Stay tuned for the formal announcement of this coming service.

To enquire about any of these international services, please contact us at: sturgeweber@kennedykrieger.org.

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