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Registry Gangliosidoses

NCT04624789 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 40

Last updated 2020-11-12

No results posted yet for this study

Summary

The clinical project "Eight At One Stroke: Attention Gangliosidoses" represents a clinical registry for recording the clinical manifestation and the disease progression of gangliosidoses. The intention of this project is to better understand the manifestation and progression of gangliosidoses and to raise awareness of these disorders in the public health service. The patients or their families, respectively, will be integrated in the study in order to measure Patient Outcome and to objectify the psychosocial burden for the patient and his family. The study has a retrospective and a prospective part. It is planned to transfer the data of the study into a continuous registry.

Conditions

  • Gangliosidoses
  • GM1 Gangliosidosis
  • Morquio B Disease
  • Sialidosis
  • Galactosialidosis
  • Gm2-Gangliosidosis, Variant B1
  • Tay-Sachs Disease
  • Sandhoff Disease
  • GM2 Activator Deficiency

Sponsors & Collaborators

  • SphinCS Lyso Gemeinnutzige UG (Haftungsbeschrankt)

    lead OTHER

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2020-06-08
Primary Completion
2020-06-12
Completion
2025-06-07

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 NCT04624789 on ClinicalTrials.gov