National Registry for Ichthyosis and Related Disorders

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.

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Key information

Conditions

Darier Disease Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Dermatitis Dermatitis, Exfoliative Epidermal Nevus Genetic Diseases, Inborn Genetic Diseases, X-Linked Hailey-Hailey Disease Hyperkeratosis, Epidermolytic Ichthyosiform Erythroderma, Congenital Ichthyosis Ichthyosis, Lamellar Ichthyosis, X-Linked Infant, Newborn, Diseases Keratoderma Keratosis Metabolic Diseases Metabolism, Inborn Errors Nails, Malformed Nutritional and Metabolic Diseases Pathological Conditions, Anatomical Pathological Conditions, Signs and Symptoms Pemphigus, Benign Familial Skin Abnormalities Skin Diseases Skin Diseases, Eczematous Skin Diseases, Genetic Skin Diseases, Vesiculobullous Skin and Connective Tissue Diseases Steroid Metabolism, Inborn Errors

Sex eligibility

All sexes

Study type

Observational

Primary location

University of Washington

Seattle, Washington, 98195, United States

About this study

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 enrollee's caregiver.

Diagnosis was confirmed by specific criteria based on clinical involvement, review of histology, and where appropriate, serum cholesterol sulfate determination or DNA analysis.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Sponsors and collaborators

Lead sponsor

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Nih

Registry information

Official study title

Research Registry for Inherited Disorders of Keratinization

Important dates

Study start: 1994
Primary completion: 2004
Study completion: 2004
First posted: Dec 19, 2003
Registry last updated: Sep 28, 2022

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed