ClinicalTrials.gov record NCT07843823

Neurocutaneous Syndromes in Children: Prevalence and Clinical Characteristics

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Sep 28, 2026

Prevalence, Clinical Characteristics, and Management of Neurocutaneous Syndromes in Children

StatusNot yet recruitingThe study has been registered but has not started enrolling. Sites and contacts may not be listed yet.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
AgeUp to 18 years old
SexAll
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This cross-sectional observational study will collect data from children (birth to 18 years) diagnosed with neurocutaneous syndromes at the Pediatric Neurology Unit, Assiut University. It will measure how common these syndromes are, describe clinical features, and record current management practices. Data are collected at a single time point; the study does not assign treatments.

What it is studying. The study aims to find how often neurocutaneous syndromes occur among pediatric neurology patients and to describe the clinical signs, laboratory and imaging findings, and how these children are being managed in current practice.

What the researchers hope to learn. To estimate the prevalence of neurocutaneous syndromes in the pediatric neurology population; to report the distribution of specific syndromes (for example Neurofibromatosis types 1 and 2, Tuberous Sclerosis Complex, Sturge-Weber Syndrome, Von Hippel-Lindau disease, Incontinentia Pigmenti, Hypomelanosis of Ito); to describe frequency of clinical features (skin findings, epilepsy, developmental delay, intellectual disability, CNS tumors, eye, heart, kidney, and musculoskeletal manifestations); and to describe current management patterns (medications, surgeries, laser therapy, physiotherapy, occupational and speech therapy, and multidisciplinary follow-up).

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

This cross-sectional study aims to determine the prevalence, clinical characteristics, and management patterns of neurocutaneous syndromes among children attending the Pediatric Neurology Unit at Assiut University.

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

  • Age from birth to 18 years
  • Diagnosis of neurocutaneous syndrome according to established clinical and/or genetic diagnostic criteria
  • Written informed consent from parents or legal guardians

Exclusion criteria

  • Uncertain diagnosis
  • Incomplete medical records
  • Refusal of parents or legal guardians to participate

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Detailed description from the registry

Neurocutaneous syndromes are congenital multisystem disorders that mainly affect the skin, nervous system, and other organs. This observational study will include children from birth to 18 years diagnosed with neurocutaneous syndromes according to established clinical and/or genetic diagnostic criteria. Data will be collected on demographic characteristics, clinical manifestations, laboratory and radiological findings, and current management practices.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

This is a single (cross-sectional) assessment in which the study team will collect demographic information, medical history, and perform a clinical examination. The study will record laboratory and radiological findings and includes assessments listed in the registry such as EEG, MRI, and ophthalmological examinations. It will also record current management practices, including medications, surgeries, laser therapy, physiotherapy, occupational and speech therapy, and whether the child receives multidisciplinary follow-up.

How the study is structured. Observational, single-group (case-only), cross-sectional study. Researchers will review and record demographic information, clinical manifestations, laboratory and radiological findings, and current management approaches for children diagnosed with neurocutaneous syndromes. All measurements and assessments are taken at baseline (a single time point) from the cohort; no interventions are given by the study.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The registry says recruitment has not started. When is it expected to open, and can I register interest now?
  • No sites are listed on the registry yet. Where will the study take place?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on tuberous sclerosis complex

Important dates

Study start
Sep 20, 2026 (estimated)
Primary completion
Sep 20, 2027 (estimated)
Study completion
Feb 20, 2028 (estimated)
Target enrollment
100 participants (estimated)
Last updated on registry
Sep 28, 2026
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor
Assiut University
Principal investigator
Eman mahmoud zaghloul, Resident Physician
Assiut University

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites

Study locations have not been posted on ClinicalTrials.gov yet. This study is not yet recruiting, so sites may be added when recruitment begins. The central study contact above may be able to tell you about planned sites.

Terms used on this page · explanations by MedicalUpdates.ai

Written informed consent
The process of explaining a study, including its risks and what participation involves, so that a person can decide freely whether to take part. Consent is usually documented in writing, and a participant can choose to leave the study later.
Inclusion Criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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