Ignite Creation Date:
2024-05-06 @ 3:13 PM
Last Modification Date:
2024-10-26 @ 1:46 PM
Study NCT ID:
NCT04569149
Status:
RECRUITING
Last Update Posted:
2023-09-29
First Post:
2020-09-23
Brief Title:
Primordial Dwarfism Registry
Sponsor:
Nemours Childrens Clinic
Organization:
Nemours Childrens Clinic
Study Overview
Official Title:
Primordial Registry at NemoursA I duPont Hospital for Children
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 goal of this registry is to collect information on individuals with forms of microcephalic primordial dwarfism The study team hopes to learn more about these conditions and improve the care of people with it by establishing this registry
Detailed Description:
The goal of this registry is to collect information on individuals with forms of microcephalic primordial dwarfism The registry will enable detailed natural history studies of MOPD II and associated conditions The study team hopes that identification of risk factors will allow for preventative treatments and thus a better quality of life for individuals with these diagnoses
This study is limited to chart review after signed informed consent obtained There will be no additional visits or time in clinic because of participation in this registry This study involves only the collection and storage of data extracted from the medical record Records that may be requested and reviewed as a part of this study include but may not be limited to specialist evaluations surgical reports results of blood and urine tests genetic testing x-rays CTMRIMRA imaging There are no special procedures visits or expectations of the individual as a result of participation in this registry No one will be asked to have any specific testing for the sole purposes of this research
This study is limited to chart review after signed informed consent obtained There will be no additional visits or time in clinic because of participation in this registry This study involves only the collection and storage of data extracted from the medical record Records that may be requested and reviewed as a part of this study include but may not be limited to specialist evaluations surgical reports results of blood and urine tests genetic testing x-rays CTMRIMRA imaging There are no special procedures visits or expectations of the individual as a result of participation in this registry No one will be asked to have any specific testing for the sole purposes of this research
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