Colombian Consortium for the Development of Research on Systemic Sclerosis (CCONDORSS) institutional registry : presentation of the registry and first preliminary report

Título traducido de la tesis: Registro institucional del Consorcio Colombiano para el Desarrollo de la Investigación en Esclerosis Sistémica (CCONDORSS): presentación del registro y primer informe preliminar

Tesis: Tesis de máster

Resumen

Background: Systemic sclerosis (SSc) is a rare autoimmune disease with diverse clinical presentations and a high disease burden. Registries have allowed a better understanding of the disease. However, research in Latin America is scarce, and registries are lacking.
Methods: We present the Colombian Consortium for the Development of Research on
Systemic Sclerosis (CCONDORSS) institutional registry. Based on the preliminary data
retrieved, we conducted an observational, descriptive, longitudinal study with a one-year follow-up.
Results: This preliminary analysis included 44 confirmed SSc patients (95.4% women), with a median follow-up of 379 days (IQR, 331–420). The median age at diagnosis was 58 years; 86.4% had limited cutaneous disease. At baseline, interstitial lung disease was present in 18.2%, pulmonary arterial hypertension in 11.4%, and gastrointestinal/musculoskeletal involvement was common; digital ulcers and calcinosis were rare. During follow-up, 50% (7/14) of VEDOSS patients progressed to SSc. Methotrexate and calcium-channel blockers were the most used medications (>70%). No major complications or deaths occurred.
Conclusion: The CCONDORSS registry lays the groundwork for future multicenter
collaboration and epidemiological characterization of SSc in Colombia, supporting future research and care strategies.
Fecha de lectura2025
Idioma originalInglés
Institución de lectura
  • Pontificia Universidad Javeriana
SupervisorSantiago Bernal Macias (Director)

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