RECRUITING

HoFH, the International Clinical Collaborators Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

Homozygous familial hypercholesterolemia (HoFH), a rare inherited disorder caused by bi-allelic mutations in the LDL Receptor pathway, is characterized by extremely elevated levels of low-density lipoprotein cholesterol (LDL-C) from birth and premature atherosclerotic cardiovascular disease (ASCVD). Our current knowledge about HoFH is disjointed and largely stems from relatively small case series and expert opinion. HICC (Homozygous FH International Clinical Collaborators) is a global consortium of clinicians who are contributing de-identified data of patients diagnosed with HoFH with the goal to advance our understanding of this rare disease.

Official Title

HoFH, the International Clinical Collaborators - A Global HoFH Data-sharing Platform

Quick Facts

Study Start:2017-01-24
Study Completion:2025-12-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04815005

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined
  1. * No diagnosis of HoFH

Contacts and Locations

Study Contact

Marina Cuchel, MD, PhD
CONTACT
2156627188
mcuchel@pennmedicine.upenn.edu
Lauren Vincent, MRA
CONTACT
2156155448
laurv@pennmedicine.upenn.edu

Principal Investigator

Marina Cuchel, MD, PhD
PRINCIPAL_INVESTIGATOR
University of Pennsylvania

Study Locations (Sites)

University of Pennsylvania
Philadelphia, Pennsylvania, 19104
United States

Collaborators and Investigators

Sponsor: University of Pennsylvania

  • Marina Cuchel, MD, PhD, PRINCIPAL_INVESTIGATOR, University of Pennsylvania

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2017-01-24
Study Completion Date2025-12-31

Study Record Updates

Study Start Date2017-01-24
Study Completion Date2025-12-31

Terms related to this study

Keywords Provided by Researchers

  • Homozygous Familial Hypercholesterolemia
  • Autosomal Dominant
  • Hypercholesterolemia
  • Autosomal Recessive Hypercholesterolemia
  • Registry

Additional Relevant MeSH Terms

  • Homozygous Familial Hypercholesterolemia