Generalized Pustular Psoriasis Registry in Costa Rica
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Generalized Pustular Psoriasis, Generalized Pustular Psoriasis (GPP). Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Costa Rica
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
National Registry of Patients With Generalized Pustular Psoriasis Treated Within the Costa Rican Social Security System
Overview
The goal of this observational registry study is to characterize the clinical, epidemiological, and therapeutic features of patients with generalized pustular psoriasis (GPP) in Costa Rica through a standardized national registry. The main question it aims to answer is: What are the clinical, epidemiological, and therapeutic characteristics of patients with generalized pustular psoriasis registered in the country, and how do these relate to disease severity and evolution? Patients with GPP receiving routine dermatologic care in participating centers will have their demographic, clinical, severity, comorbidity, and treatment data recorded using a standardized case report form. Clinical assessments (e.g., GPPASI, PASI/BSA, DLQI), laboratory results, triggers, complications, and therapies will be documented and updated during periodic follow-up visits as part of usual care.
Detailed description
Generalized pustular psoriasis (GPP) is a rare, severe, and potentially life-threatening inflammatory dermatosis characterized by recurrent flares of sterile pustules on erythematous skin with systemic involvement. In Costa Rica and much of Latin America, the absence of structured epidemiologic and clinical data has limited understanding of disease burden, phenotypic patterns, triggers, comorbidities, and real-world therapeutic outcomes. This has contributed to diagnostic delays, heterogeneous management, and uncertainty regarding optimal use of systemic and biologic therapies.
To address this gap, a national observational registry has been established within the Costa Rican Social Security health system to systematically collect standardized longitudinal data on patients with confirmed GPP. The registry captures information generated during routine dermatologic care without altering clinical management. Data are entered in a structured case report form aligned with international GPP research standards and include demographics, clinical phenotype, disease course, severity indices (e.g., GPPASI, PASI/BSA, DLQI), laboratory markers, comorbidities, identified triggers, and details of systemic and biologic treatments and their outcomes. Periodic follow-up enables evaluation of disease evolution, treatment persistence, dose modifications, adverse events, and complications over time.
The registry is designed to generate the first national dataset on GPP, enabling characterization of prevalence, regional distribution, severity patterns, and therapeutic responses in the local population. Standardized data collection is expected to improve comparability across centers, support development of evidence-based national management strategies, and facilitate participation in international collaborative research networks focused on rare and severe psoriasis.
Primary outcome measures
- Disease course and evolution [Time frame: 5 years]
- Clinical severity of generalized pustular psoriasis [Time frame: 5 years]
- Change in Generalized Pustular Psoriasis Area and Severity Index [Time frame: 5 years]
- Change in Body Surface Area Affected [Time frame: 5 years]
- Treatment-Related Adverse Events [Time frame: 5 years]
- Proportion of Treatments Used [Time frame: 5 years]
Secondary outcome measures (2)
- Clinical severity of generalized pustular psoriasis [Time frame: 5 years]
- Change in Psoriasis Area and Severity Index [Time frame: 5 years]
Eligibility criteria
Inclusion criteria
- Confirmed diagnosis of generalized pustular psoriasis (GPP) established by a board-certified dermatologist based on compatible clinical and/or histopathologic criteria.
- Registered diagnosis of GPP in the institutional electronic health record system (EDUS code L401) during the study period.
- Patients of any age and sex receiving care within participating centers of the Costa Rican Social Security system.
- Availability of clinical information sufficient for registry data entry and follow-up according to routine care.
Exclusion criteria
- Patients without a confirmed diagnosis of generalized pustular psoriasis (GPP) or with alternative pustular dermatoses (e.g., acute generalized exanthematous pustulosis) not meeting GPP diagnostic criteria.
- Absence of verifiable diagnosis in the institutional electronic health record (EDUS) or insufficient documentation to confirm GPP.
- Patients whose clinical records lack the minimum data required for registry variables or follow-up within routine care.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
Costa Rica · 1 center
- Caja Costarricense del Seguro Social — San José
Identifiers
NCT: NCT07448428 · CEC HCG 14-2025