Overview

Hypotonia and Neurofibromatosis Type 1 (NF1) Glioma

Status:
Terminated
Trial end date:
2019-02-07
Target enrollment:
0
Participant gender:
All
Summary
Currently, optic pathway gliomas (OPG) are detected based on abnormal findings made during annual ophthalmologic exams. However, because these exams are annual, it is possible for healthcare providers to miss the point at which a child's vision begins to decline (potentially indicating an OPG). If at-risk children are screened for hypotonia early in life, those children who are hypotonic may undergo magnetic resonance imaging (MRI) to evaluate for OPG before they are showing ophthalmologic symptoms. This would enable healthcare providers to discover vision loss earlier and treat symptomatic OPGs earlier, thereby allowing us a better chance of preventing further vision loss in children with OPGs.
Phase:
N/A
Accepts Healthy Volunteers?
No
Details
Lead Sponsor:
Washington University School of Medicine
Collaborator:
St. Louis Children's Hospital
Criteria
Inclusion Criteria:

- Patient must be seen at the St. Louis Children's Hospital NF Clinic

- Diagnosis of NF1

- Between 1 and 7 years of age, inclusive

- Diagnosed with hypotonia

- Legally authorized representative/guardian must be able to understand and willing to
sign an IRB-approved informed consent document

- Must have an MRI scan ordered by a treating physician

Exclusion Criteria:

- Normal tone on clinical exam

- Known allergy to gadolinium or the sedative, propofol, used during MRI

- Poor kidney function defined as a known renal disease or elevated BUN and creatine

- Requiring intubation for anesthesia