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The Meeting Report of the Feasibility Project: Istanbul Solution Platform Undiagnosed and Rare Diseases (ISTisNA)
'Istanbul Undiagnosed and Rare Diseases Solution Platform (ISTisNA)' Feasibility Project Meeting was held on October 21, 2019, at the Health Institutes of Turkey (TUSEB) Istanbul Koşuyolu campus. Faculty members and researchers from Acıbadem Mehmet Ali Aydınlar University and Istanbul University Aziz Sancar Experimental Medical Research Institute (DETAE), experts from Istanbul Development Agency (ISTKA), and members of the Institute of Public Health and Chronic Diseases (TUHKE) attended the meeting.
The main theme of the ISTisNA Project is to provide information about the diagnosis, treatment, and care standards to the healthcare professionals who will undertake the follow-up and treatment of rare disease patients; collect biodata in this field (establishing a biobank); carry out surveys to determine the frequency and genetic characteristics of rare diseases in Turkey; and conduct translational researches that can be turned into products to be used in the diagnosis, treatment, and monitoring of the diseases (diagnostic kits, biomarkers, medical devices, drugs, etc.) for the benefits of patients.
The project management will be carried by Acibadem Mehmet Ali Aydinlar University. TUSEB-TUHKE, Istanbul University Aziz Sancar DETAE, Istanbul Provincial Health Directorate, and the Turkish Confederation of Disabled Peoples will be the main partners of the ISTisNA project.
Professor Ugur Ozbek, the Executive Manager of the project stated that promoting local resources and collecting biodata for the benefit of the patients and their caregivers are the main goals they aimed to achieve. Professor Adil Mardinoglu, the president of TUSEB said that since there are not many countries focusing on rare diseases nowadays, such a study will make a difference in the world. He stated that as TUSEB, their aim is to reduce the costs of diagnosis of rare diseases through creating inexpensive kits.
The meeting was concluded with the decision of the representatives of the stakeholder institutions to come together in the first week of November and make the necessary plan to prepare the technical report by partners of the project.