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Home > "N" Clinical Trials Conditions > National Registry for Ichthyosis and Related Disorders  National Registry for Ichthyosis and Related Disorders
National Registry for Ichthyosis and Related Disorders
For Condition: Ichthyosis, Lamellar,Hyperkeratosis, Epidermolytic,Ichthyosiform Erythroderma, Congenital,Ichthyosis,Ichthyosis, X-Linked
Status: No longer recruiting
Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) ,
Synopsis: The ichthyoses are a family of genetic skin diseases characterized by dry, thickened, scaling skin. Dermatologists estimate that there are at least 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 researchers a way to share information about studies and trials with potential participants while maintaining participants’ privacy.
Details: 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 with those that have enrolled in the registry and expressed an interest in finding out about studies. Participants may enroll in the registry by contacting the registry officials. All participants will have a phone interview with a study research nurse. Participants will be encouraged to complete an online registration form at www.skinregistry.org prior to the phone interview. Participants will be asked about their medical history, current physical condition, and other family members with skin disorders. Participants will also indicate whether they would like to be contacted about participating in clinical research.
Eligibility:
Study Type: Observational, Screening, Cross-Sectional, Defined Population, Retrospective Study
Minimum Age/Maximum Age: /
Genders: Both
Protocol Entry Criteria: Note: Accrual into this study has been discontinued as of 03/31/04. Inclusion Criteria: - Diagnosis of one of the ichthyoses, erythrokeratodermas, Darier disease, Hailey-Hailey disease, palmar-plantar keratodermas, pachyonychia congenita, extensive epidermal nevi, or related disorder Exclusion Criteria: - Ichthyosis Vulgaris
Total Enrollment:
Location and Contact Information:
Overall Study Official:
PhilipFleckman, Principal Investigator, University of Washington
University of Washington
Seattle, Washington, 98195
United States
Additional Information:
Study ID Numbers: NIAMS-101;
Study Start Date:
Record last reviewed: March 2004
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00074685
Other Ichthyosiform Erythroderma, Congenital Studies:
1. National Registry for Ichthyosis and Related Disorders
Related Studies:
Other Ichthyosiform Erythroderma, Congenital Clinical Trials
Other Washington Clinical Trials
Other Seattle Clinical Trials
National Registry for Ichthyosis and Related Disorders
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