ALLMedicine™ Sturge-Weber Syndrome Center

Aug 8th, 2022 - JAAD Game Changers: Forehead location and large segmental pattern of facial port-wine stains predict risk of Sturge-Weber syndrome.|2022|Schaffer JV,|

Aug 7th, 2022 - Epilepsy is one of the most common neurological disorders in children. Among very young children, one-third are resistant to medical treatment, and lack of effective treatment may result in adverse outcomes. Although functional hemispherotomy is a...

Aug 4th, 2022 - Introduction: The prevalence and patterns of sleep disturbances in neurocutaneous syndromes are variable and understudied. Methods: Cross-sectional study for 18 months at a tertiary care pediatric hospital, involving 100 children with neurocutaneo...

Jul 26th, 2022 - The spectrum of EEG abnormalities in the disconnected hemisphere in seizure-free patients after hemispherectomy has not been well characterized. Fifty consecutive patients who were seizure-free following hemispheric disconnection were identified. ...

Jun 29th, 2022 - There is limited evidence on the best available treatment options for capillary malformations (CMs), mainly due to the absence of uniform outcome measures in trials on therapies. A core outcome set (COS) enables standard reporting of trial outcome...

Mar 2nd, 2022 - We hope to gain an understanding of the utility of pure CBD used for the treatment of medically refractory epilepsy in SWS in this open-label, safety dose-finding, study. Recent evidence suggests that CBD has multiple, beneficial, effects in patie...

Jan 10th, 2022 - This project will combine advanced neuroimaging with detailed neuro-psychology evaluation, performed in both children and young adults affected by Sturge-Weber syndrome, in order to address two main aims, each of them with two research hypotheses:...

Nov 1st, 2021 - Sirolimus will be administered as an adjunct to all current medications. The impact of sirolimus upon cognitive functioning in Sturge-Weber syndrome is the primary outcome measure. This outcome will be assessed using a panel of testing selected ba...

Sep 8th, 2021 - Aim 1: Develop a longitudinal database of patients with SWS Clinical sites will collect longitudinal data retrospectively on measures of clinical symptoms and medications/treatments for study subjects who participated in the existing BVMC2/SWF reg...

Aug 26th, 2021 - This study is one of three projects of an NIH Rare Disease Clinical Research Consortium focused on brain blood vessel malformations in three different rare diseases. The focus of this project is on Sturge-Weber Syndrome. We plan to improve the fut...

Aug 27th, 2019 - The Diagnosis: Phacomatosis Cesioflammea Phacomatosis pigmentovascularis (PPV) encompasses a group of diseases that have a vascular nevus coupled with a pigmented nevus. 1 It is divided into 5 types: Type I is defined by the presence of a vascular.

Oct 29th, 2017 - In high-risk port-wine stain phenotypes – forehead, hemifacial, and median – early referral to a pediatric neurologist is the best way to enable early symptom recognition of Sturge-Weber syndrome (SWS), according to results of a literature review.

Oct 13th, 2017 - The Diagnosis: Phakomatosis Pigmentovascularis With Sturge-Weber Syndrome The erythematous patches were identified as capillary malformations (port-wine stains) and the slate gray pigmentary changes as dermal melanocytosis (Mongolian spots)(Figure.

Oct 2nd, 2017 - Sturge-Weber syndrome (SWS) is a disease of dermatologic, neurologic, and ocular significance. 1 The most distinctive manifestation is facial capillary malformation, commonly referred to as a port-wine stain or nevus flammeus.

Aug 7th, 2017 - CHICAGO – Screening infants with a port-wine stain for Sturge-Weber syndrome (SWS) with a magnetic resonance imaging brain scan had a 23% false-negative rate and actually delayed seizure detection, according to a recent study. When infants with po.