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

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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.

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About the authors

Alexey A. Kubanov

State Scientific Centre of Dermatovenereology and Cosmetology

Email: alex@cnikvi.ru
ORCID iD: 0000-0002-7625-0503
SPIN-code: 8771-4990

MD, PhD, Professor, Corresponding Member of the RAS

Russian Federation, 3 bld. 6 Korolenko str., Moscow, 107076

Elena V. Bogdanova

State Scientific Centre of Dermatovenereology and Cosmetology

Author for correspondence.
Email: onama@mail.ru
ORCID iD: 0000-0002-0662-2682
SPIN-code: 6372-2237

MD, PhD

Russian Federation, 3 bld. 6 Korolenko str., Moscow, 107076

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  119. Постановление Правительства РФ от 26 апреля 2012 г. № 403 «О порядке ведения Федерального регистра лиц, страдающих жизнеугрожающими и хроническими прогрессирующими редкими (орфанными) заболеваниями, приводящими к сокращению продолжительности жизни граждан или их инвалидности, и его регионального сегмента». [Resolution of the Government of the Russian Federation of April 26, 2012 No. 403 «On the procedure for maintaining the Federal register of persons suffering from life-threatening and chronic progressive rare (orphan) diseases leading to a reduction in the life expectancy of citizens or their disability, and its regional segment»(In Russ.)]
  120. Постановление Правительства РФ от 8 апреля 2017 г. № 426 «Об утверждении Правил ведения Федерального регистра лиц, инфицированных вирусом иммунодефицита человека, и Федерального регистра лиц, больных туберкулезом». [Resolution of the Government of the Russian Federation of April 8, 2017 No. 426 «On approval of the Rules for maintaining the Federal Register of Persons Infected with Human Immunodeficiency Virus and the Federal Register of Persons with Tuberculosis»(In Russ.)]
  121. Постановление Правительства РФ от 26 ноября 2018 г. № 1416 «О порядке организации обеспечения лекарственными средствами лиц, больных гемофилией, муковисцидозомм, гипофизарным нанизмом, болезнью Гоше, злокачественными новообразованиями лимфоидной, кроветворной и родственных им тканей, рассеянным склерозом, гемолитико-уремическим синдромом, юношеским артритом с системным началом, мукополисахаридозом I, II и VI типов, апластической анемией неуточненной, наследственным дефицитом факторов II (фибриногена), VII (лабильного), X (Стюарта–Прауэра), лиц после трансплантации органов и(или) тканей, а также о признании утратившими силу некоторых актов Правительства Российской Федерации». [Decree of the Government of the Russian Federation of November 26, 2018 No. 1416 «On the procedure for organizing the provision of medicines to persons with hemophilia, cystic fibrosis, pituitary dwarfism, Gaucher disease, malignant neoplasms of lymphoid, hematopoietic and related tissues, multiple sclerosis, hemolytic uremic syndrome, juvenile arthritis with systemic onset, mucopolysaccharidosis types I, II and VI, unspecified aplastic anemia, hereditary deficiency of factors II (fibrinogen), VII (labile), X (Stuart–Prower), persons after organ and (or) tissue transplantation, and also on recognizing as invalid some acts of the Government of the Russian Federation» (In Russ.)]
  122. Постановление Правительства РФ от 12 октября 2020 г. № 1656 «Об утверждении Правил ведения Федерального регистра граждан, имеющих право на обеспечение лекарственными препаратами, медицинскими изделиями и специализированными продуктами лечебного питания за счет бюджетных ассигнований федерального бюджета и бюджетов субъектов Российской Федерации». [Decree of the Government of the Russian Federation of October 12, 2020 No. 1656 «On approval of the Rules for maintaining the Federal Register of Citizens Eligible for the Provision of Medicines, Medical Devices and Specialized Health Food Products at the expense of budgetary allocations from the federal budget and the budgets of the constituent entities of the Russian Federation» (In Russ.)]

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