CompletedNot Applicable

Neuronal Ceroid Lipofuscinosis and Associated Sleep Abnormalities

United States57 participantsStarted 2013-07

Plain-language summary

Neuronal Ceroid Lipofuscinosis (NCL) also known at Batten's disease is the most common neurodegenerative disorder in children. Families often report the patient has a sleep disturbance. This is a questionnaire to be completed by the family to better understand the sleep pattern and sleep difficulties experienced by individuals who have been diagnosed with NCL.

Who can participate

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * patient with a known diagnosis of Neuronal Ceroid Lipofuscinosis (NCL) by DNA or electron microscopy studies Family member completing study must be able to read and understand the Children's Sleep Habits Questionnaire (CSHQ) and Demographic questions Exclusion Criteria: * patient without a confirmed diagnosis of NCL Family member completing the study is unable to read and understand the questionnaires

What they're measuring

Sleep disturbance

Timeframe: one year

Trial details

NCT IDNCT01966757

SponsorNationwide Children's Hospital

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2016-07

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