Clinical Research Details

Clinical Research

The Park-Reeves Syringomyelia Research Consortium

Study Description

The Park-Reeves Syringomyelia Research Consortium is a North American multi-center research effort to address these issues in chiari I malformation and syringomyelia research by 1) creating a multi-functional syringomyelia disease registry to study the disorder, its natural history, clinical course following treatment, and understanding the Quality of Life in a large number of patients, and 2) use advanced magnetic resonance imaging techniques to study the pathophysiology of the condition.

Inclusion/Exclusion Criteria

Inclusion:

Patients 0-21 years old with syringomyelia and Chiari I malformation.  Chiari I malformation is defined as descent of the cerebellar tonsils 5 mm or more below the foramen magnum.  Syrinx is defined as having a diameter equal to or greater than 3 mm.
As of Oct 03, 2014, enrolled participants will be prospective only.  Prospective is defined as a participant/delegate who signs the consent/assent before the decompression surgery.

Exclusion: Patients who choose not to participate in the study.
As of Oct 03, 2014, retrospective and conservatively managed patients will no longer be included. Retrospective is defined as a patient/delegate who does not sign the consent/assent before the decompression surgery.

 

Investigators