The five lenses will be tested in each patient following always the same specific order, with the most protective lenses tested first (Z1).
Z1F133 (Zeiss Clarlet Z1) is a CE marked device manufactured by Carl Zeiss Vision International GmBH (Aalen, Germany).
Our lenses are CE marked devices manufactured by Cerium Optical Products (Kent, UK).

Reflex Epilepsy, Photosensitive

Eyeglasses

Z1 lens

Experimental Lens 1

Experimental Lens 2

Experimental Lens 3

Experimental Lens 4

Birmingham Women's and Children's NHS Foundation Trust

Aston University

Efficacy of Lenses in Abolishing Photoparoxysmal Responses

Efficacy of New Lenses in Abolishing Photoparoxysmal Responses in Paediatric Patients With Photosensitive Epilepsy (PSE)

Relative change in the photoparoxysmal response grade

Relative change in the standardized photoparoxysmal response range (SPR)

The score obtained in the different sections of the Patient Satisfaction Questionnaire [on a scale from 1 (worst outcome) to 5 (best outcome)]

All data recruited at BCH and at the ABC will be pseudonymized before being shared with the PI at Aston University to protect patient confidentiality.

Ana Checa-Ros, MD, PhD

Visiting Research Fellow

Participants will be recruited among those patients (both males and females) from 5 to 18 years with suspected or confirmed diagnosis of generalised epilepsy with photosensitivity or photosensitive epilepsy (PSE) who comply with the established inclusion criteria.
No control patients will be required, since each patient will be tested with the different lenses in a specific order and will be, in turn, his/her own control. No randomisation will be carried out in our study.

Sjogren-Larsson Syndrome (SLS)

University of Nebraska Medical Center

University of Pittsburgh Medical Center

Sjogren-Larsson Syndrome: Natural History, Clinical Variation and Evaluation of Biochemical Markers

Sjogren-Larsson Syndrome: A Longitudinal Study of Natural History, Clinical Variation and Evaluation of Biochemical Markers

Determine the spectrum of clinical disease severity and changes in severity of symptoms over time. Each organ system will be evaluated using validated clinical exams (for example, Modified Ashworth Spasticity Score for neurologic severity) or categorical tests (such as EEG normal or abnormal). The clinical data will be used to develop a quantitative SLS severity score whereby patients will be described (for example, overall severity 1 to 5 with score 1 being the mildest phenotype and score 5 being the most severe). These quantitative outcome measures will be followed over time to assess disease progression.

Blood, urine and skin biomarkers will be explored to identify tests that correlate with clinical severity of SLS. Multiple tests will be performed and outcome measures will be statistically compared to the clinical severity score to determine correlation coefficients, which will be used to establish new biomarkers for SLS.

macular degeneration/crise épileptique

Efficacy of Lenses in Abolishing Photoparoxysmal Responses

Sjogren-Larsson Syndrome: Natural History, Clinical Variation and Evaluation of Biochemical Markers

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