The Unified Registry of Patients with Pulmonary Hypertension Is Created in Ukraine

KYIV, Ukraine - Dec. 25, 2014 - PRLog -- Pulmonary hypertension is a rare disease which causes are unknown to science. It makes a person an invalid, deprives of opportunity to breathe and move fully and reduces life up to 2 years without a corresponding, lifelong and extremely expensive treatment (more than 700 USD per month). Life expectancy increases till 15-20 years with modern methods of treatment. Such patients, both adults and children (total number of which is about 650-700 people in Ukraine) are in need of government assistance, but they can't receive it.Due to the lack of Unified registry of patients with pulmonary hypertension, there is no statistical data of these patients and as a consequence, the possibility of creating state assistance programs.

Work on creation of the Unified registry of patients with pulmonary hypertensionof Ukraine within the program "A Breath of Air" was carried out by the Charitable Foundation "Life in All Beauty" (CF "LA BEAUTY").

"Together with Igor Leontiev, database developer, we've created and devolved this Registry to the only Center of pulmonary hypertension in Ukraine, in particular, to the curator of the project professor Yuriy Sirenko who will form a list of the major medical institutions of our country which will collect information from the regions and enter data to the Registry online "- commented Yuliya Strizhkina, The Chairman of the CF "LA BEAUTY". - "In fact, every patient will have own electronic card of the patient which will be updated regardless of which medical institution or city and to what doctor the patient turned to."

Professor Yuriy Sirenko characterized creation of the Registry as a great achievement in a situation with patients with pulmonary hypertension as it will help to reveal real number of patients, provide timely data transmission about patients and their referral for consultation, diagnostics and treatment, will define the need for resources, their distribution and control, costs planning for the future also.

According to Yuliya Strizhkina, recognition of the Registry at the state level and inclusion of the government and municipal institutions in implementation of this project is planned as the following important step.

Charitable Foundation "Life in All Beauty" dated creation of this Registry to the International Rare Disease Day which will be celebrated on February`28 in 2015 year as a contribution from Ukrainian side to this world event.