SI-SARK Registry

Continuous collection of data to improve understanding and management of patients with sarcomas.

Soft tissue and bone sarcomas are rare diseases that require specialised and multidisciplinary management. The SI-SARK registry is intended for the collection of demographic, clinical and pathological data on adult patients with soft tissue and bone sarcomas who are treated or managed at the Institute of Oncology Ljubljana.

Purpose of the registry

The purpose of the registry is to obtain high-quality data on patients with sarcomas, enabling analysis of the quality of care and treatment, monitoring of treatment outcomes and survival, and development of new knowledge about these rare diseases. The collected data may also contribute to future national and international research.

Inclusion procedure

If the patient decides to participate, they sign consent for the collection and processing of data. The registry includes data generated as part of usual healthcare, including basic demographic data, imaging results, tumour characteristics, treatment course and follow-up after completion of treatment. The data are stored in an electronic database and are processed confidentially or anonymised for research purposes, so that the patient’s identity cannot be disclosed. Participation in the registry does not affect the course of treatment.

Who can take part?

Adult patients with malignant tumours of soft tissue or bone who are treated or managed at the Institute of Oncology Ljubljana.

How to apply?

The patient will be informed about the possibility of inclusion by a physician. Before inclusion, the patient receives all necessary information and signs consent to participate. Participation is voluntary and may be withdrawn at any time without affecting further treatment. For additional information, please contact your treating physician or the study staff by email: [email protected].