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Natural History and Longitudinal Clinical Assessments in NCL / Batten Disease, the International DEM-CHILD Database

NCT04613089 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 500

Last updated 2021-10-29

No results posted yet for this study

Summary

This is an observational study that aims at assessing the natural history of NCL diseases as part of the international DEM-CHILD Database.

1. Patient data are collected from medical records, patient questionnaires and routine follow up clinical examinations with focus on assessing progression in key areas of disease such as motor, language, cognition, seizures, vision, and behavior.
2. A local biorepository of samples from genetically defined NCL patients will be established as well as a virtual biorepository within the DEM-CHILD DB to be able to easily localize international availability of patient samples.

Conditions

  • Neuronal Ceroid Lipofuscinosis
  • Batten Disease
  • CLN1 Disease
  • CLN2 Disease
  • CLN3 Disease
  • CLN4 Disease
  • CLN5 Disease
  • CLN6 Disease
  • CLN7 Disease
  • CLN8 Disease
  • CLN10 Disease
  • CLN11 Disease
  • CLN12 Disease
  • CLN13 Disease
  • CLN14 Disease

Interventions

OTHER

Natural History

Natural History and Clinical Follow Up.

Sponsors & Collaborators

  • Universitätsklinikum Hamburg-Eppendorf

    lead OTHER

Principal Investigators

  • Angela Schulz, MD, PhD · Head of NCL-Specialty Clinic

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2020-04-08
Primary Completion
2050-04-08
Completion
2050-04-08

Countries

  • Germany

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04613089 on ClinicalTrials.gov