CYPRUS RHEUMATOLOGY SOCIETY 2015-2017 BIOLOGIC REGISTRY CYPRUS RHEUMATOLOGY SOCIETY 2015-2017

Registry A registry is an organized system that collects uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.

registries supplement information obtained from randomized controlled trials efficacy and safety of biologic agents relation of biologic use and the incidence of tuberculosis, lymphoma, or its effect on pregnancy. population-specific, with different biologic uses comorbidity patterns socio-demographic and geographic factors provides real-life information

The implementation and maintenance of registries. CHALENGES 1. LOGISTICS: the careful organization of a complicated activity so that it happens in a successful and effective way. 2. METHODOLOGIES: methods, principles and rules for regulating a given project. 3. Human, and financial RESOURCES: The people who make up the workforce of an organization and the money available for spending.

Cyprus REK 2015 -Thoughts: Create new registry from the beginning (Dr Vasos Skoutellas) Get rights from established international registries (Swedish) Create our own registry, based on other registries: British, South African, Swedish. We looked in detail at all possibilities and decided to use number three based on the Swedish registry.

IT company Private IT companies Cytacom Solutions Ltd, subsidiary of the Cyprus Telecommunications Authority (Cyta).

FUNDING Pharmaceutical companies

Months of meetings Registry ‘committee’ was created: Un-official, informal group of colleagues that dedicated many hours of their free time. Major contribution from Elpida Mina and later Sofia Symeonidou due to their knowledge and access to the Swedish registry, Savvas Psarellis (present at all meetings), as well as the IT department of Cyta.com (many hours of consultation at their office).

LICENCE Cytacom solutions legal requirements for entry of confidential, personal data on to the program

Άδεια Προσωπικών Δεδομένων από επίτροπο διοικήσεως 2 αιτησεις- 2 απορρίψεις Τρίτη αίτηση. Συνάντηση 1. επίτροπο προστασίας δεδομένων προσωπικού χαρακτήρα, ΡΕΚ, AΣΚ, Δικηγόρο –Κον Φιλιππο Καμενο 8 August 2017 Final approvalΙανουάριος 2018- Κρυπτογράφηση δεδομένων από Cytacom solutions, πρώτη του είδους και προσφέρεται δωρεάν

Συνάντηση επίτροπο προστασίας δεδομένων προσωπικού χαρακτήρα ΡΕΚ, AΣΚ, Δικηγόρο –Κον Φιλιππο Καμενο 8 August 2017 Final approval Ιανουάριος 2018- Κρυπτογράφηση δεδομένων από Cytacom solutions, πρώτη του είδους και προσφέρεται δωρεάν

8 August 2017 -Final Approval Κρυπτογράφηση δεδομένων από Cytacom solutions, πρώτη του είδους και προσφέρεται δωρεάν (pilot work)

Entry of patients-Implementation Voluntary VS Compulsory Remuneration