RECRUITING

Clinical and Basic Investigations Into Congenital Disorders of Glycosylation

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Conditions

Congenital Disorders of GlycosylationCDGCDDGCongenital Disorders of DeglycosylationALG1ALG3ALG6ALG12ALG13COG6DPAGT1DPM1EDEM3MAN1B1MPDU1MPINGLY1PGAP3PGM1PIGAPIGGPIGNPIGSPIGTPMM2SLC35A2SLC35C1SLC39A8SRD5A3SSR4FUT8GALNT2MAN2B2VMA21

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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

The purpose of this research is to study the natural history of congenital disorders of glycosylation and its causes and treatments.

Official Title

Clinical and Basic Investigations Into Congenital Disorders of Glycosylation

Quick Facts

Study Start:2019-10-08
Study Completion:2025-07-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04199000

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. * Individuals with a genetically, enzymatically, or molecularly confirmed diagnosis of CDG or NGLY1 deficiency
  1. * None

Contacts and Locations

Study Contact

Eva Morava-Kozicz, PhD, MD
CONTACT
(504) 444-9386
eva.morava@mssm.edu
Mary Freeman, MS, CGC
CONTACT
212-659-1434
mary.freeman@mssm.edu

Principal Investigator

Eva Morava-Kozicz, MD, PhD
PRINCIPAL_INVESTIGATOR
Icahn School of Medicine at Mount Sinai

Study Locations (Sites)

Rady Children's Hospital
San Diego, California, 92123
United States
Children's Hospital of Colorado
Aurora, Colorado, 80045
United States
Mayo Clinic Florida
Jacksonville, Florida, 32224
United States
Tulane University School of Medicine
New Orleans, Louisiana, 70112
United States
Boston Children's Hospital
Boston, Massachusetts, 02115
United States
University of Minnesota
Minneapolis, Minnesota, 55454
United States
Mayo Clinic in Rochester
Rochester, Minnesota, 55905
United States
Icahn School of Medicine at Mount Sinai
New York, New York, 10029
United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19146
United States
Children's Hospital of Pittsburgh
Pittsburgh, Pennsylvania, 15224
United States
Baylor College of Medicine
Houston, Texas, 77030
United States
Seattle Children's Hospital
Seattle, Washington, 98105
United States

Collaborators and Investigators

Sponsor: Icahn School of Medicine at Mount Sinai

  • Eva Morava-Kozicz, MD, PhD, PRINCIPAL_INVESTIGATOR, Icahn School of Medicine at Mount Sinai

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 Date2019-10-08
Study Completion Date2025-07-31

Study Record Updates

Study Start Date2019-10-08
Study Completion Date2025-07-31

Terms related to this study

Keywords Provided by Researchers

  • CDG
  • CDDG
  • Congenital Disorders of Glycosylation
  • Congenital Disorders of Deglycosylation
  • ALG1
  • ALG3
  • ALG6
  • ALG12
  • ALG13
  • COG6
  • DPAGT1
  • DPM1
  • EDEM3
  • MAN1B1
  • MPDU1
  • MPI
  • NGLY1
  • PGAP3
  • PGM1
  • PIGA
  • PIGG
  • PIGN
  • PIGS
  • PIGT
  • PMM2
  • SLC35A2
  • SLC35C1
  • SLC39A8
  • SRD5A3
  • SSR4
  • FUT8
  • GALNT2
  • MAN2B2
  • VMA21

Additional Relevant MeSH Terms

  • Congenital Disorders of Glycosylation