Ignite Creation Date:
2024-05-05 @ 11:33 AM
Last Modification Date:
2024-10-26 @ 9:09 AM
Study NCT ID:
NCT00074685
Status:
COMPLETED
Last Update Posted:
2022-09-28
First Post:
2003-12-18
Brief Title:
National Registry for Ichthyosis and Related Disorders
Sponsor:
National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS
Organization:
National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS
Study Overview
Official Title:
Research Registry for Inherited Disorders of Keratinization
Status:
COMPLETED
Status Verified Date:
2009-04
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 ichthyoses are a family of genetic skin diseases characterized by dry thickened scaling skin Dermatologists estimate that there are over twenty varieties of ichthyosis with a wide range of severity and associated symptoms This registry is designed to identify people in the United States with the ichthyoses and other related disorders and to collect information about their skin ailment and how it has affected them The database is available for review by approved research applicants The registry is confidential and provides investigators a way to share information about studies and trials with potential participants while maintaining participants privacy
Although the Registry is closed to new enrollment it is still maintained in order to provide information related to understanding the diagnosis pathophysiology and treatment of ichthyoses Support for studies continues and inquiries from investigators are welcomed
Although the Registry is closed to new enrollment it is still maintained in order to provide information related to understanding the diagnosis pathophysiology and treatment of ichthyoses Support for studies continues and inquiries from investigators are welcomed
Detailed Description:
The purpose of this registry is to support studies aimed at determining the cause of the ichthyoses and treating them more effectively The Registry offers blinded information about well-characterized groups of individuals with specific diagnoses for study by skin biologists pharmacologists and others The Registry also provides information about research projects to those that have enrolled in the Registry and expressed an interest in participating in studies
Participants enrolled in the Registry by contacting the registry officials All participants participated in a phone interview with the study research nurse Participants were asked about diagnostic testing treatments birth history medical history degree and type of involvement current physical condition and other family members with skin disorders A quality of life index was embedded in the interview Participants also indicated whether they would like to be contacted about participating in clinical research This information was complemented by an enrollment form from the enrollees caregiver
Diagnosis was confirmed by specific criteria based on clinical involvement review of histology and where appropriate serum cholesterol sulfate determination or DNA analysis
Participants enrolled in the Registry by contacting the registry officials All participants participated in a phone interview with the study research nurse Participants were asked about diagnostic testing treatments birth history medical history degree and type of involvement current physical condition and other family members with skin disorders A quality of life index was embedded in the interview Participants also indicated whether they would like to be contacted about participating in clinical research This information was complemented by an enrollment form from the enrollees caregiver
Diagnosis was confirmed by specific criteria based on clinical involvement review of histology and where appropriate serum cholesterol sulfate determination or DNA analysis
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None