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InFocus France Epidemiological Study of Health Burden in Major Hypertriglyceridemia

NCT04223908 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 52

Last updated 2020-01-10

No results posted yet for this study

Summary

FCS and MCS patients recruited from 7 academic reference centers were invited to answer a paper or a web questionnaire. Questions encompassed demographics, physical, cognitive and mental symptoms, health care circuit, past and current disease management, satisfaction regarding healthcare providers and impact on daily life.

Conditions

  • Familial Chylomicronemia Syndrome
  • Multifactorial Chylomicronemia Syndrome

Interventions

OTHER

observational : questionnaries for assessment of health burden

The French IN-FOCUS study was designed to capture current and retrospective data in FCS or MCS. Patients were called by the participating centers and were proposed to answer a paper questionnaire or to connect to a web-based questionnaire The questionnaire was divided into sections specifically assessing various domains of their experience: demographic data, signs, symptoms and complications of the disease, healthcare circuit, management, relationship with healthcare providers, and burden of the disease on daily life. (Details are available as supplementary material S1). The questionnaire focused on symptoms because the interest of quality of life assessment tools is debated in rare diseases with episodic manifestations. Indeed, most of these tools refer to a limited recall period.

Sponsors & Collaborators

  • Akcea Therapeutics

    collaborator INDUSTRY

  • New French Society of Atherosclerosis

    lead OTHER

Principal Investigators

  • Philippe Moulin · New French Atherosclerosis Siciety

Eligibility

Min Age
18 Years
Max Age
100 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2018-09-19
Primary Completion
2019-09-01
Completion
2019-09-01

Countries

  • France

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04223908 on ClinicalTrials.gov