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A Multidisciplinary Consensus for Clinical Care and Research Needs for Sturge-Weber Syndrome
Alejandro J De la Torre1, Aimee F Luat2, Csaba Juhász2
1Department of Neurology, Northwestern University, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
Pediatric Neurology
|May 28, 2018
Summary
Sturge-Weber syndrome requires updated consensus guidelines for lifelong multidisciplinary care and surveillance. Research is needed to understand its complexities and improve patient quality of life.
Area of Science:
- Neurology
- Dermatology
- Ophthalmology
Background:
- Sturge-Weber syndrome is a rare neurocutaneous disorder.
- It presents with port-wine birthmarks, brain abnormalities, and glaucoma.
- Physician awareness of its complexity and complications is limited.
Purpose of the Study:
- To identify current knowledge, gaps, and unmet needs in Sturge-Weber syndrome care.
- To inform future research directions and clinical practice.
Main Methods:
- Convened clinicians and patients from the Sturge-Weber Foundation networks.
- Focused on identifying knowledge gaps and unmet needs.
Main Results:
- A key unmet need is the lack of consensus guidelines for care and surveillance.
- Multidisciplinary, lifelong follow-up is recommended for monitoring disease progression.
- Standardized neuroimaging, clinicopathologic understanding, and data acquisition are crucial.
Conclusions:
- Biomarkers are needed to predict disease progression and guide therapies.
- Addressing the psychological and emotional impact on quality of life is a critical unmet need.
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