3AHealth partners with Thalassaemia International Federation (TIF) – https://thalassaemia.org.cy/ – to deliver the first dedicated electronic registry (e-registry) solution that is designed to address Thalassaemia lifelong disease.
In collaboration with TIF medical experts, 3aHealth has developed an e-registry solution that is already available in clinical practice at a national level in Cyprus keeping the electronic health record of approximately 1000 Thalassaemia patients. Early adopters further include Greece and Bulgaria, with pilot testing starting during the 4th quarter of 2020. Following the pilot testing phase, the 3AHealth-TIF e-registry will be available to Thalassaemia treatment centres globally. The Federation currently represents a total of 232 members from 62 countries.
Thalassaemia is a lifelong disease with a life expectancy today which can extend to a ‘normal’ life scan if current regimes are religiously followed. Thalassaemia differs from many other diseases in that events or treatment in the past, have an impact on the natural progression of the disease years later. It is important therefore, to keep past health records of patient monitoring and events over the patients’ lifetime. Paper held records are impossible to keep and even to refer to past years, because of the huge volume of information. Data are very difficult to extract and analyse. The use of an electronic database is, for these reasons, imperative in thalassaemia.
In response to this need, TIF has taken the initiative to develop such an electronic registry, hoping to replace paper held records in all centres that treat patients globally. The additional benefit is that, with central governmental support, all patients receiving treatment will be registered on such a system, giving for the first time the opportunity to have a national patient register, which is a basic tool for planning services form this lifelong condition and is lacking in many countries. Sharing data among approved medical practitioners, with all confidentiality regulations in force, and with the patients’ consent, will make networking and sharing of expertise a reality.
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