Scientists launch worldwide registry to unlock rare Fat-Storage disease
NCT ID NCT02918032
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is creating an international registry for people with neutral lipid storage disease (NLSD), a rare condition where fat builds up in cells, especially affecting the heart. Researchers will collect medical history, track disease progression, and look for factors that influence survival. The goal is to better understand the disease and support future treatment development.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this registry could help identify factors that affect disease progression and point toward better management strategies for NLSD/TGCV.
What could go wrong
This is an observational registry, not a treatment trial, so it will not directly test a new therapy. Results depend on voluntary reporting and may not apply to all patients.
Disclaimer
Read more
Show less
This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for NEUTRAL LIPID STORAGE DISEASE are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Study contacts
-
Contact
Phone: •••-•••-••••
Locations
-
A.C.O. San Filippo Neri Hospital
RECRUITINGRome, Lazio, 00193, Italy
Contact Phone: •••-•••-••••
-
Catholic University
RECRUITINGMilan, Lombardy, 20123, Italy
Contact Phone: •••-•••-••••
-
Columbia University
RECRUITINGNew York, New York, 10027, United States
Contact Phone: •••-•••-••••
-
Graduate School of Osaka University
RECRUITINGSuita, Osaka, 565-0874, Japan
Contact Phone: •••-•••-••••
-
Harefield Hospital
RECRUITINGHarefield, London, UB9 6JH, United Kingdom
Contact Phone: •••-•••-••••
-
Ludwig-Maximilians University
RECRUITINGMunich, Bavaria, 80539, Germany
Contact Phone: •••-•••-••••
-
Maastricht University
RECRUITINGMaastricht, Limburg, 6211, Netherlands
Contact Phone: •••-•••-••••
-
National Center of Neurology and Psychiatry
RECRUITINGKodaira, Tokyo, 187-8551, Japan
Contact Phone: •••-•••-••••
-
New Castle University
RECRUITINGNewcastle upon Tyne, Tyne and Wear, NE1 7RU, United Kingdom
Contact Phone: •••-•••-••••
-
Peking University First Hospital
RECRUITINGBeijing, Beijing Municipality, 100034, China
Contact Phone: •••-•••-••••
-
Pitié-Salpêtrière Hospital
RECRUITINGParis, Paris, 75013, France
Contact Phone: •••-•••-••••
Contact Phone: •••-•••-••••
-
Sapienza University of Rome
RECRUITINGRome, Lazio, 00185, Italy
Contact Phone: •••-•••-••••
-
Stanford University
RECRUITINGStanford, California, 94305-2004, United States
Contact Phone: •••-•••-••••
-
University of Graz
RECRUITINGGraz, Styria, 8010, Austria
Contact Phone: •••-•••-••••
-
University of Padova
RECRUITINGPadova, Veneto, 35122, Italy
Contact Phone: •••-•••-••••