Ignite Creation Date:
2024-05-06 @ 2:02 PM
Last Modification Date:
2024-10-26 @ 1:24 PM
Study NCT ID:
NCT04199000
Status:
RECRUITING
Last Update Posted:
2024-04-26
First Post:
2019-12-08
Brief Title:
Clinical and Basic Investigations Into Congenital Disorders of Glycosylation
Sponsor:
Icahn School of Medicine at Mount Sinai
Organization:
Icahn School of Medicine at Mount Sinai
Study Overview
Official Title:
Clinical and Basic Investigations Into Congenital Disorders of Glycosylation
Status:
RECRUITING
Status Verified Date:
2024-09
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
The purpose of this research is to study the natural history of congenital disorders of glycosylation and its causes and treatments
Detailed Description:
The investigators are conducting a natural history study of patients with congenital disorders of glycosylation CDG The study will look into the progression of the disease amongst the participants and also look at the clinical symptoms and how they vary amongst different diseased population groups The participants will be asked to fill out questionnaires either on their own or with a provider that will grade the severity of disease and document symptoms and diet Participants will have an opportunity to submit blood urine and stool samples that will be tested for biomarkers for CDG
Participants will also complete dietary food records physical exams CDG scores and the PROMIS questionnaires to assess disease progression and severity
Participants will also complete dietary food records physical exams CDG scores and the PROMIS questionnaires to assess disease progression and severity
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| U54NS115198-01 | NIH | None | httpsreporternihgovquickSearchU54NS115198-01 |