Review of patient registries in dermatology

Abstract

Background: Patient registries are datasets containing information on patients with a particular disease or patients who are undergoing a specific treatment.

Objective: Our objective was to search for and catalog the types of registries being used in dermatology and investigate their characteristics and uses.

Methods: We searched Google, the Registry of Patient Registries, Orphanet, and ClinicalTrials.gov to compile a list of dermatology disease registries. We also conducted a literature review on the uses of dermatology registries using PubMed.

Results: We identified 48 dermatology patient registries, with 23 distinct diseases represented. We also identified 11 registries used for postmarketing surveillance of skin disease.

Limitations: Our search was limited to registries in English.

Conclusions: Registries are commonly used for the study of rare dermatologic diseases and for postsurveillance monitoring of systemic therapies in more common dermatologic diseases, such as psoriasis.

Keywords: clinical trial; international; postmarketing surveillance; psoriasis; rare dermatologic disease; research.