Understanding Rare Lipid Disorders and Atherosclerosis

This study is looking to better understand rare conditions that affect the fats in your blood (dyslipidemia) or cause unusual hardening of the arteries (atherosclerosis). Researchers want to learn how these conditions change over time and how they respond to treatments. They also aim to develop new ways to diagnose these disorders. You could be eligible if you are 10 years or older and have a suspected or confirmed rare lipid disorder or unusual atherosclerosis. The main goal is to track changes in your 'bad' cholesterol (LDL-C) over many years, up to 20 years, to gain insights into these conditions and ultimately improve patient care.

Study design
This is an observational study, meaning researchers will collect information about your condition over time. It plans to include 1500 participants.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for changes in their 'bad' cholesterol (LDL-C) for up to 20 years.

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NCT06676046

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

Recruiting
Not specifiedAges 10–90Observational
National Heart, Lung, and Blood Institute (NHLBI)
~1,500 participants
Updated 2026-03-23 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Change overtime in low-density lipoprotein cholesterol (LDL-C).
Measured over up to 20 years
Dyslipidemia
Atherosclerosis
1 sites across 1 states
Maryland1
  • Marcelo J Amar, M.D. · PRINCIPAL_INVESTIGATOR · National Heart, Lung, and Blood Institute (NHLBI)

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Eligibility criteria

Inclusion

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
Ability of the subject or Legally Authorized Representative (LAR) to understand and willingness to sign a written informed consent document.
Participants must be healthy, with no known history of lipid disorders or related medical conditions.
Participants must not be pregnant.

Exclusion

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.
  • Change overtime in low-density lipoprotein cholesterol (LDL-C).up to 20 years

    To observe change overtime in low-density lipoprotein cholesterol (LDL-C).