Neutral lipid storage disease (NLSD) / triglyceride deposit cardiomyovasculopathy (TDCV) is a very rare disease that results in accumulation of neutral fat in the body including the muscles and the heart. Since this disease is very rare, its course (symptoms and severity, etc.) and effective treatment methods have not been sufficiently clarified. Also, the number of patients in Japan is limited and collection of information on Japanese patients is considered to be insufficient for understanding the disease course. Therefore, we have planned to conduct an international study of NLSD / TGCV. This study will be used for development of new treatments for NLSD / TGCV, a condition that is difficult to treat.


2. Study Objective
This study aims to reveal the symptoms and course of NLSD / TGCV.

3. Participation into / Withdrawal from the Study
Please decide whether or not to participate in this study based on your free will upon obtaining the information on this study from your physician in charge or the researcher. You will not be disadvantaged in any way in your future treatment even if you choose not to participate.
Also, you will be notified of new information useful for your treatment if such information is obtained during the conduct of the study. (Treatments that patients are receiving are also the subject of investigation in this study.)
In addition, you are free to withdraw from the study whenever you wish after you have agreed to participate in the study and after the start of the study. Also, you will not be disadvantaged in any way if you choose to withdraw from the study.
You will not be charged for this study.
If it is difficult for you to provide your consent due to your condition, your legal representative (spouse, relative, etc.) may provide consent for you to participate in this study.


4. Study Method
For development and administration of the study system, your symptoms, test results, and treatment will be investigated in a way that your name will not be identified, with cooperation from the Translational Research Informatics Center, Foundation for Biomedical Research and Innovation, Public Interest Incorporated Foundation (Kobe-shi). This study will be conducted as an international collaborative study. The study results will be analyzed together with those of other patients (including patients inside and outside Japan). The final results will be published as an academic paper, at research presentations, and on internet websites. The scheduled registration period for this study is until December 31, 2018.


6. Protection of Privacy
At the time of registration to the study, your name will not be registered and thus your name or identification will not be disclosed.

7. Inquiries regarding the Study
If you wish to obtain more detailed information on this study, please ask your physician in charge or contact the following address:


<Contact address>
Office of administrative committee
Kenichi Hirano,

Assistant professor, Department of Cardiovascular Medicine, Faculty of Internal Medicine, Graduate School of Medicine, Osaka University
TEL: +81-6-6872-8215
E-mail: registry@cnt-osaka.com