Actively Recruiting

All Genders
NCT02918032

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

Led by Translational Research Center for Medical Innovation, Kobe, Hyogo, Japan · Updated on 2026-02-05

120

Participants Needed

15

Research Sites

743 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

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.

CONDITIONS

Official Title

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

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Patients who are diagnosed with NLSD / TGCV
Not Eligible

You will not qualify if you...

History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety

AI-Screening

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Trial Site Locations

Total: 15 locations

1

Stanford University

Stanford, California, United States, 94305-2004

Actively Recruiting

2

Columbia University

New York, New York, United States, 10027

Actively Recruiting

3

University of Graz

Graz, Styria, Austria, 8010

Actively Recruiting

4

Peking University First Hospital

Beijing, Beijing Municipality, China, 100034

Actively Recruiting

5

Pitié-Salpêtrière Hospital

Paris, Paris, France, 75013

Actively Recruiting

6

Ludwig-Maximilians University

Munich, Bavaria, Germany, 80539

Actively Recruiting

7

Sapienza University of Rome

Rome, Lazio, Italy, 00185

Actively Recruiting

8

A.C.O. San Filippo Neri Hospital

Rome, Lazio, Italy, 00193

Actively Recruiting

9

Catholic University

Milan, Lombardy, Italy, 20123

Actively Recruiting

10

University of Padova

Padova, Veneto, Italy, 35122

Actively Recruiting

11

Graduate School of Osaka University

Suita, Osaka, Japan, 565-0874

Actively Recruiting

12

National Center of Neurology and Psychiatry

Kodaira, Tokyo, Japan, 187-8551

Actively Recruiting

13

Maastricht University

Maastricht, Limburg, Netherlands, 6211

Actively Recruiting

14

Harefield Hospital

Harefield, London, United Kingdom, UB9 6JH

Actively Recruiting

15

New Castle University

Newcastle upon Tyne, Tyne and Wear, United Kingdom, NE1 7RU

Actively Recruiting

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Research Team

K

Kenichi Hirano, MD, Ph.D

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

1

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