DM registry - Serbia

DM registry - Serbia

Serbian DM registry was founded in November 2008 at the Neurology Clinic, Clinical Centre of Serbia, School of Medicine, University of Belgrade. It has been named Akhenaten after a pharaoh of Egypt who probably suffered from myotonic dystrophy. The founder of the registry and principal investigator is Prof. Vidosava Rakocevic Stojanovic and the main curator of the registry is Dr. Stojan Peric (stojanperic@gmail.com).

Akhenaten has been formed to investigate epidemiology and natural history of myotonic dystrophies, to enable the recruitment of patients for research and clinical trials of symptomatic treatment and new promising therapeutic strategies. The registry enables patients to be contacted and informed when there is a study of interest.There are several ongoing research projects including investigations of clinical and molecular aspects of the disease.

If you have any further questions regarding the registry, please email stojanperic@gmail.com

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Srpski registar za miotonične distrofije (dystrophia myotonica, DM) osnovan je u novembru 2008. godine na Klinici za neurologiju Kliničkog centra Srbije. Nazvan je Akhenaten, prema egipatskom faraonu koji je verovatno imao ovu bolest. Osnivač registra i glavni istraživač je prof. dr Vidosava Rakočević Stojanović, a glavni urednik registra dr Stojan Perić (stojanperic@gmail.com).

Akhenaten je formiran sa ciljem da obezbedi podatke za epidemiološka istraživanja, istraživanja prirodnog toka bolesti, kao i da omogući uključivanje bolesnika u naučna istraživanja, kliničke studije efekta simptomatske terapije i novih terapeutskih strategija. Registar omogućava da bolesnici budu brzo kontaktirani i informisani kada postoji studija od interesa. U tome je njegov poseban značaj s obzirom da se radi o retkoj bolesti.

Za sva dodatna pitanja oko registra, možete koristiti mejl stojanperic@gmail.com

Email

Website www.drustvoneurologasrbije.org

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