DMD registry - Russia

DMD registry - Russia

At the moment there are two independent databases - one in Moscow and one in St Petersburg. In the future, a combination of these two databases is planned.

Moscow Database
The database in Moscow for patients with DMD and SMA is located at the Moscow Regional Children Psychoneurological Hospital and co-sponsored by the Interregional Association of Foundation of assistance to people suffering with Neuromuscular diseases "Nadezhda", President Russian MDA Nataliya Gerasimova (phone: +74954129158).

Information about the registry can be found at www.modpnb.com. The coordinators are Dr. Svetlana Artemieva, MD, PhD, neurologist and Evgeny Gerasimov.

The database in Moscow is a professional-report registry. Registration through self-report form will be available soon. It is planned that local reference centers in the main regions (Ural, Siberia) of Russia will be crearted where patients will registered through their clinicians.

St Petersburg Database
The database in St Petersburg is located in: Laboratory of prenatal diagnostics of inherited diseases, Ott Institute for Obstetrics and Gynecology RAMS, 199034, Mendeleevskaja line 3, St Petersburg, Russia.

Curator: Dr Alexander N Baranov
Tel.: 007-(812)-328-98-09
Email: alexbar@mail.ru
Registry email address: nmd-spb@mail.ru

Supporting patient organization:
St Petersburg association of societies of parents with disabled children GAOORDI,
192174, av Obuchovskoi Oboroni 199,
St Petersburg,
Russia

President: URMANCHEYEVA Margarita
tel. 007-(812)-362-76-80
email: president@gaoordi.ru

The database in St Petersburg is a professional-report registry, where the patients are registered through their clinicians. In the future it is anticipated that those patients living in remote regions will be able to utilise a self-report system.