What Are Patient Registries and Why Are They Needed (Through a Number of Examples of Psoriasis Registries)

Abstract

The article substantiates the relevance of registries of patients as illustrated by registries of patients with psoriasis, gives a comparative characteristic and description of the advantages and disadvantages of randomized controlled and observational registry studies, considers the main goals of patient registers. The importance of patient registers as sources of additional knowledge about diseases is described. Review of the existing dermatological patient registers is given. The paper provides the detailed description of the most significant registries of patients with psoriasis: PSOLAR, Badbir, Corrona, BIOBADADERM and others. An overview of publications and main results of the research based on registries of psoriasis patients is presented. A description of the register of patients with psoriasis as part of the Database of patients with chronic diseases of the skin and subcutaneous tissue, maintained by the Russian Society of Dermatovenereologists and Cosmetologists since 2018 is given. The article substantiates the relevance of patient registries as illustrated by registries of patients with psoriasis, gives a comparative characteristic and description of the advantages and disadvantages of randomized controlled studies and observational registry studies, argues in favor of complementarity of data from randomized controlled trials and registry-based studies. Consideration of the main goals of patient registers is given. The importance of patient registers as sources of additional knowledge about diseases and quality of medical care is described. Review of the existing dermatological patient registers is given. The paper provides the detailed description of the most significant registries of patients with psoriasis: PSOLAR, Badbir, Corrona, BIOBADADERM and others. An overview of publications and main results of the research based on registries of patients with psoriasis is presented. A description of the register of patients with psoriasis as part of the Database of patients with chronic diseases of the skin and subcutaneous tissue, maintained by the Russian Society of Dermatovenereologists and Cosmetologists since 2018 is given, as are inclusion criteria. In addition, the main federal registries of patients that are maintained in the Russian Federation are listed, the goals of their maintenance are indicated.