Реални ползи от приложението на епидемиолoгични регистри в областта на редките болести

  • Цонка Митева-Катранджиева
Keywords: епидемиологични регистри, ползи, редки болести

Abstract

Въпреки че редките болести традиционно представляват значителен интерес за клиницистите от диагностична перспектива, те са по-слабо представени по отношение на научните изследвания и епидемиология поради слабото си разпространение. Недостатъчността на данните се дължи най-вече на липсата на епидемиологични регистри на регионално или национално ниво, както и косвено на непълнотата на Международната класификация на болестите, в която огромен брой редки състояния не са описани и нямат собствен код. Епидемологичните регистри могат да дадат основа за разрешаване на тези проблеми чрез събирането както на ретроспективни, така и на проспективни данни.

Цел на настоящата публикация е изтъкването на реалните ползи от прилагането на тези регистри за редки заболявания. Проучена е достъпната научна литература и са реферирани статии, описващи множество ползи. Регистрите могат да са полезни за всички заинтересовани страни, а именно: за пациентите и пациентските организации, търсещи помощ и информация, за инвеститорите, провеждащи проучвания, за клиницистите, лекуващи пациентите, за епидемиолозите, които анализират данните, за фармацевтичните компании, проучващи нови пазари, за здравните власти, взимащи решения за планиране в системата на здравеопазване.

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Published
2017-06-15
How to Cite
1.
Митева-Катранджиева Ц. Реални ползи от приложението на епидемиолoгични регистри в областта на редките болести. Редки болести и лекарства сираци [Internet]. 2017Jun.15 [cited 2020Oct.31];8(2):8-12. Available from: http://journal.raredis.org/index.php/RBLS/article/view/27
Section
Статии

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