International Registry Study of Neutral Lipid Storage Disease (NLSD) / Triglyceride Deposit Cardiomyovasculopathy (TGCV) and Related Diseases

Conditions

• Neutral Lipid Storage Disease

Eligibility Criteria

Sex

ALL

Age

N/A - N/A

Healthy Volunteers

Not accepted

Study Details

This study aims to understand the state of onset of NLSD(neutral lipid storage disease) / TGCV(triglyceride deposit cardiovasculopathy) worldwide, background information of affected patients, and natural history of the disease, as well as exploring the prognostic factors and assessing the efficacy of disease-specific treatment.

Key Dates

Start date

Jan 31, 2014

Status verified

Feb 2026

Primary completion

Mar 31, 2028

Completion

Mar 31, 2028

Study Design

Enrollment

120 participants (estimated)

Arms

• Arm: NLSD / TGCV
  Patients who are diagnosed with NLSD / TGCV

Primary Outcome Measure

Period from the diagnosis of NLSD / TGCV to death from any cause [ Time Frame: 5 years ]

Central Contacts

• Kenichi Hirano, MD, Ph.D
  +81-6-6872-8215

Locations (2)

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