Ignite Creation Date:
2024-10-26 @ 3:43 PM
Last Modification Date:
2024-10-26 @ 3:43 PM
Study NCT ID:
NCT06654765
Status:
NOT_YET_RECRUITING
Last Update Posted:
None
First Post:
2024-10-15
Brief Title:
Growth and Development of Children With Inborn Errors of Metabolism in Assiut Governorate
Sponsor:
None
Organization:
None
Study Overview
Official Title:
Growth and Development of Children With Inborn Errors of Metabolism in Assiut Governorate
Status:
NOT_YET_RECRUITING
Status Verified Date:
2024-09
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
No
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
Assessment of growth and development of children with inborn errors of metabolism in Assiut Governorate
Detailed Description:
Inborn errors of metabolism IEM are diseases resulting in deficient activity of an individual enzyme structural protein in an intermediate metabolic pathway present clinically in a wide variety of ways a ranging from non-specific chronic issues such as childhood delay in attaining development milestones to acute decompensation
The prevalence of all of inborn errors of metabolism globally is 509100000 live birth In Egypt the prevalence among clinically suspected children is 78
A study conducted in Minia Governorate Egypt on children less than 18 years included 67 children showed that 657 of children were under height Also a study conducted in upper Egypt on 113 PKU patients showed that global developmental delay 549 was the most frequent presentations of PKU children Parents of children with IEM face many challenges as the financial burden and perceived restrictions in all aspects of life discrimination by society in general and the main challenge is dietary restrictions
Rationale
Despite being rare in Egypt IEM are regarded as a national priority because of the substantial health burden they place on the growth and development of the affected children which can range from delayed achievement of developmental milestones to acute decompensation and death
However there is lack of longitudinal studies in Egypt that focus on how IEM affect physical development and growth as well as the difficulties parents encounter while caring for their children and following up with them To our knowledge no local studies have been conducted in this field before
The prevalence of all of inborn errors of metabolism globally is 509100000 live birth In Egypt the prevalence among clinically suspected children is 78
A study conducted in Minia Governorate Egypt on children less than 18 years included 67 children showed that 657 of children were under height Also a study conducted in upper Egypt on 113 PKU patients showed that global developmental delay 549 was the most frequent presentations of PKU children Parents of children with IEM face many challenges as the financial burden and perceived restrictions in all aspects of life discrimination by society in general and the main challenge is dietary restrictions
Rationale
Despite being rare in Egypt IEM are regarded as a national priority because of the substantial health burden they place on the growth and development of the affected children which can range from delayed achievement of developmental milestones to acute decompensation and death
However there is lack of longitudinal studies in Egypt that focus on how IEM affect physical development and growth as well as the difficulties parents encounter while caring for their children and following up with them To our knowledge no local studies have been conducted in this field before
Study Oversight
Has Oversight DMC:
Is a FDA Regulated Drug?:
Is a FDA Regulated Device?:
Is an Unapproved Device?:
Is a PPSD?:
Is a US Export?:
Is an FDA AA801 Violation?: