MEASuRE: Metreleptin Effectiveness And Safety Registry for Lipodystrophy

This study, called MEASuRE, is looking at the long-term safety of metreleptin when used by patients with Generalised Lipodystrophy or Partial Lipodystrophy in their daily lives. It's an observational study, meaning researchers will collect information from people already taking metreleptin, rather than giving them a new treatment. The main goal is to track how often certain safety events, like pancreatitis or infections, occur over at least 10 years. You might be able to join if you are already being treated with metreleptin commercially, or if you are coming off a metreleptin clinical study and continuing the treatment. The study is currently unclear on its recruitment status, but plans to enroll about 100 participants.

Study design
This is an observational study, not a clinical trial where a treatment is tested. It will follow about 100 participants who are already taking metreleptin.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Safety events will be collected from the first dose to the last visit, for a minimum of 10 years. For those already taking metreleptin, serious adverse events will be collected from 6 months before joining the study to the last visit, for a minimum of 10 years.

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NCT02325674

MEASuRE: Metreleptin Effectiveness And Safety Registry

Recruiting
Not specifiedAll AgesObservational
Chiesi Farmaceutici S.p.A.
~100 participants
Updated 2026-07-16 on ClinicalTrials.gov
What's tested:Metreleptin

At a glance

Recruiting sites
20 of 28 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
The severity and incidence of the following safety events in patients prescribed Metreleptin in routine clinical practice
Measured over Adverse events will be collected from first dose to last visit - min. 10 years. For Prevalent Users: Serious adverse events will be collected from 6 months prior to enrolment to last visit - min. 10 years.
Generalised Lipodystrophy
Partial Lipodystrophy
28 sites across 25 states
Louisiana2
Michigan2
Pennsylvania2
Alabama1
California1
Georgia1
Illinois1
Kansas1
  • Lori Hartnett · STUDY_DIRECTOR · Amryt Pharmaceuticals DAC

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Eligibility criteria

Inclusion

Patients treated with metreleptin through commercial supply at the time or before enrolment into registry
Patients who provide a written consent
Patient coming off metreleptin clinical studies and continuing or restarting treatment with metreleptin through commercial supply
  • The severity and incidence of the following safety events in patients prescribed Metreleptin in routine clinical practiceAdverse events will be collected from first dose to last visit - min. 10 years. For Prevalent Users: Serious adverse events will be collected from 6 months prior to enrolment to last visit - min. 10 years.

    Estimation of the incidence rates of the following events of special interest in patients treated with metreleptin as part of current clinical practice: acute pancreatitis associated with discontinuation of metreleptin including fatal or necrotizing pancreatitis, hepatic adverse events, severe hypoglycemia, serious hypersensitivity reactions, serious and severe infections resulting in hospitalization or death, loss of efficacy, new diagnoses of autoimmune disorders, autoimmune disease exacerbation, all cancers, exposed pregnancies and pregnancy outcomes, all-cause deaths, medication errors.