Clinical trial Recruiting at 1 site Observational Ages 10 to 90

Understanding rare lipid disorders and their effects over time

Official title: Natural History of Uncommon Dyslipidemias, Rare Lipid Disorders and Unusual Atherosclerotic Conditions

Run by National Institutes of Health Clinical Center (CC) · NCT06676046 · Data updated 2026-11-12

This study is trying to understand how rare lipid disorders change over time and how they respond to treatments in people aged 10 and older.

Quick facts

Study typeObservational
Ages10 Years to 90 Years
SexAll
Enrollment1500 (estimated)
SponsorNational Institutes of Health Clinical Center (CC)
NIH
Locations1 site (Bethesda, Maryland)
StatusRecruiting
StartedJanuary 15, 2025
Main results expectedNovember 24, 2044
Study endsNovember 24, 2044
Registry record updatedMarch 23, 2026
Trial IDNCT06676046 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include individuals aged 10 years and older with confirmed or suspected rare lipid disorders or abnormal atherosclerosis patterns.

Probably not a fit

Patients with common secondary disorders affecting lipid levels may not benefit from this study.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to investigate the natural history of uncommon dyslipidemias and rare lipid disorders, focusing on how these conditions evolve and respond to therapies over time. Participants aged 10 years and older, both in the U.S. and internationally, will be enrolled to provide data on lipid levels and cardiovascular risk markers. The study will utilize both conventional and virtual methods to collect patient data and specimens, with the goal of developing new diagnostic tools and improving patient health outcomes.

Why it matters

Potential benefit: If successful, this study could lead to better understanding and management of rare lipid disorders, ultimately improving patient health.

How similar studies have gone: While there have been studies on common dyslipidemias, this focus on rare lipid disorders represents a novel approach.

Who can join: the full rules

Show full inclusion / exclusion criteria
* INCLUSION CRITERIA:

Affected Participants

* Male and female participants age \>= 10 years.
* Subjects with confirmed or suspected rare disorder that causes lipid/lipoprotein abnormalities (dyslipidemia) or abnormal documented or referred atherosclerosis patterns.
* Only affected individuals (not healthy volunteers and for self-referred subjects independent of lipid and lipoprotein marker values.); subjects with laboratory or clinical presentation that in the opinion of the Principal Investigator, would alter the determination of normal

parameters for assays and screening tools development.

-Ability of the subject or Legally Authorized Representative (LAR) to understand and willingness to sign a written informed consent document.

Healthy Volunteers

* Participants must be healthy, with no known history of lipid disorders or related medical conditions.
* Participants must not be pregnant.

EXCLUSION CRITERIA:

* Patients with disorders that cause common secondary/lipoprotein alterations.
* Patients with any other findings that, in the opinion of the Principal Investigator, would preclude them from participating in the study.

Where it's running

  • National Institutes of Health Clinical Center
    Bethesda, Maryland, United States
    Recruiting

Study contacts

  • Principal investigator: Marcelo J Amar, M.D. — National Heart, Lung, and Blood Institute (NHLBI)
  • Study coordinator: Joy Lynne V Freeman
  • Email: joylynne.freeman@nih.gov
  • Phone: (301) 480-7632

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.