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TIF’s e-registry for patients with thalassaemia is ready for piloting

 

TIF with support from Celgene Corporation, has developed a disease specific e-registry with health record for patients with thalassaemia. This e-registry is now completed, as a first version, and is ready to be piloted in selected centres in Cyprus, Greece and Bulgaria. After piloting and user comments, the e-registry will be available to thalassaemia treatment centres globally and free of charge.

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 life long 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.

 

According to the EU Commission [6.2.2019 C(2019) 800] final recommendation on a European Electronic Health Record exchange format:

“The ability of citizens and healthcare providers to securely access and share electronic health records (‘EHR’s), that is to say collections of longitudinal medical records or similar documentation of an individual, in digital form, within and across borders has a number of benefits:

– an improvement in the quality of care for citizens,

– reduction in the cost of health care to households, and

– it supports the modernization of health systems in the Union that are under pressure from demographic changes, rising expectations and costs of treatment.“