Status:

UNKNOWN

The Natural History of Danon Disease

Lead Sponsor:

University of California, San Diego

Collaborating Sponsors:

Rocket Pharmaceuticals Inc.

Conditions:

Danon Disease

Eligibility:

All Genders

Up to 100 years

Brief Summary

Danon disease (DD) is a rare, X-linked disorder associated with severe cardiomyopathy, and in many cases, skeletal myopathy, and cognitive impairment caused by mutations in the LAMP2 gene. There is st...

Detailed Description

The study design will include: 1. Collection of information for all patients from: * Survey of patient or caregiver (if the patient has deceased) * Medical Charts 2. Collection of information ...

Eligibility Criteria

Inclusion

  • • Living or deceased patients with a diagnosis of Danon disease(including patients who may or may not have undergone heart transplantation) based on a genetic test positive for the LAMP2 mutation

Exclusion

  • • Patients without a genetic test positive for a LAMP2 mutation

Key Trial Info

Start Date :

November 30 2018

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

November 1 2024

Estimated Enrollment :

200 Patients enrolled

Trial Details

Trial ID

NCT03766386

Start Date

November 30 2018

End Date

November 1 2024

Last Update

May 12 2022

Active Locations (1)

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1

University of California, San Diego

San Diego, California, United States, 92122-5671