Clinical and Basic Investigations Into Congenital Disorders of Glycosylation

Part of paid clinical trials in San Diego, California.

Sponsor
Icahn School of Medicine at Mount Sinai
Study ID
NCT04199000
Status
Recruiting

Conditions

  • Congenital Disorders of Glycosylation

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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

Key Dates

Start date
Oct 8, 2019
Status verified
Aug 2025
Primary completion
Jul 31, 2030
Completion
Jul 31, 2030

Study Design

Enrollment
500 participants (estimated)

Primary Outcome Measure

Indicators of Disease Severity and Progression - organ system involvement [ Time Frame: Length of study, up to 5 years ]

Central Contacts

Locations (12)

FacilityCityStateZIPSite coordinators
Rady Children's HospitalSan DiegoCalifornia92123
Jennifer Friedman, MD
Corrine Blucher
Jennifer Friedman, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital of ColoradoAuroraColorado80045
Austin Larson, MD
303-724-3632
Christien Hernandez
720-777-0440
Austin Larson, MD (PRINCIPAL_INVESTIGATOR)
Mayo Clinic FloridaJacksonvilleFlorida32224
Karthik Muthusamy, MD
Karthik Muthusamy, MD (PRINCIPAL_INVESTIGATOR)
Tulane University School of MedicineNew OrleansLouisiana70112
Hans Anderrson, MD
504-988-5101
Hans Anderrson, MD (PRINCIPAL_INVESTIGATOR)
Boston Children's HospitalBostonMassachusetts02115
Gerard Berry, MD
617-355-6394
Gerard Berry, MD (PRINCIPAL_INVESTIGATOR)
University of MinnesotaMinneapolisMinnesota55454
Kyriakie Sarafoglou, MD
612-624-5409
Natalie Pogorelc
Kyriakie Sarfoglou, MD (PRINCIPAL_INVESTIGATOR)
Mayo Clinic in RochesterRochesterMinnesota55905
Bryce Kuschel, MS
507-266-9140
Marc Patterson, MD (PRINCIPAL_INVESTIGATOR)
Icahn School of Medicine at Mount SinaiNew YorkNew York10029
Mary Freeman, MS, CGC
212-659-1434
Jaya Ganesh, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital of PhiladelphiaPhiladelphiaPennsylvania19146
Andrew Edmondson, MD
215-590-3376
Mehdi Youbi
267-425-1787
Andrew Edmondson, MD (PRINCIPAL_INVESTIGATOR)
Miao He, PhD (PRINCIPAL_INVESTIGATOR)
Children's Hospital of PittsburghPittsburghPennsylvania15224
Evgenia Sklirou, MD, FACMG
412-692-5070
Angela Leshinski, MBA, RD, LDN
412-692-5232
Gerard Vockley, MD, PhD (PRINCIPAL_INVESTIGATOR)
Evgenia Sklirou, MD, FACMG (SUB_INVESTIGATOR)
Baylor College of MedicineHoustonTexas77030
Fernando Scaglia, MD, FACMG
832-822-4280
May Ali
832-822-1630
Fernando Scaglia, MD, FACMG (PRINCIPAL_INVESTIGATOR)
Seattle Children's HospitalSeattleWashington98105
Christina Lam, MD
206-987-3012
Hayden Vruegdenhil
206-884-1264
Christina Lam, MD (PRINCIPAL_INVESTIGATOR)

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