The Knowing and Treating Kosaki / Penttinen syndromes study 

Knowing and Treating Kosaki/Penttinen is a real-life observational study, which means that it does not change the way the patient is treated by the healthcare team. We are simply observing how the patient's health status evolves during the course of their usual medical follow-up. The referring doctor remains responsible for the suggested medical follow-up.

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Depending on the patient's age and state of health, as well as current scientific and medical knowledge, various examinations will be repeated at varying intervals. In particular, the appearance and development of arterial aneurysms will be monitored. The initiation of TKI treatment will remain at the discretion of the referring physician, with the patient's consent and if permitted by national legislation.

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During the follow-up, the referring physician fills in the Cleanweb© database from the patient's medical record. The health data will be pseudonymised using a patient identification number, which guarantees the confidentiality and security of the data.

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Firstly, it will enable us to improve our knowledge of these diseases by collecting information on symptoms, age of onset, severity, evolution, diagnostic methods used, changes in drug and non-drug management, etc.

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In a second phase, we would also like to compare the outcomes of treated and untreated patients to determine on a larger scale and with greater certainty whether TKIs are effective in treating these two diseases.

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We want to include as many patients as possible in the study to get a comprehensive picture of these diseases. In addition, to gain as much perspective as possible on the evolution of these diseases and on the safety and efficacy of TKIs, we are planning a minimum study duration of 25 years.

The University Hospital of Dijon Bourgogne is the coordinating centre of the study.

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In order to ensure maximum security for the transfer of data to the coordinating centre, each participating centre will have to sign a contract with the coordinating centre setting out the terms and conditions for the transfer of patient data in a document known as a data transfer agreement.

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Your follow-up data will not be accessible to other referring physicians, but will be available to the Dijon Bourgogne University Hospital, in the person of Professor Laurence FAIVRE, the principal investigator of the study, and some of her colleagues, to ensure regular documentation of the database and to analyse the data. Any doctor participating in the database can propose to carry out a specific study using the data. In this case, the request is submitted to the consortium and the anonymised data are sent to the doctor who will carry out the work.