Croatian NMD Registry for Pediatrics
Croatian national registry of patients with Duchenne and Becker Muscular Dystrophy and Spinal Muscular Atrophy type I, II, III and IV is now active.
The registry has been developed by the Referral Centre for paediatric neuromuscular diseases of Croatian Ministry of health – at the Division of paediatric neurology, University Hospital Centre Zagreb (KBC Zagreb), University of Zagreb Medical School in cooperation with Croatian Alliance of Muscular Dystrophy Associations and other clinical centres in Croatia.
We kindly invite any patients, parents , associations or medical professionals to contact us if they know individuals who like to be a part of the Croatian DMD, BMD or SMA Registry.
For additional information you can contact us at: registar.nmb@gmail.com or at http://www.hddn.hlz.hr/hr/index.php.
——-
Hrvatski registar pacijenata oboljelih od Duchenneove i Beckerove mišićne distrofije kao i oboljelih od spinalne mišićne atrofije tipa I, II, III i IV je trenutno u izradi. Na ovom projektu zajedničkim snagama rade Referentni centar Ministarstva zdravlja Republike Hrvatske za pedijatrijske neuromuskularne bolesti – Zavod za pedijatrijsku neurologiju Kliničkog bolničkog centra Zagreb te Savez društava distrofičara Hrvatske i ostali klinički bolnički centri u Hrvatskoj. Ako ste i sami oboljeli od Duchenneove ili Beckerove mišićne distrofije, spinalne mišićne atrofije ili ste roditelj, organizacija ili liječnik nekog od oboljelih koji bi se željeli upisati u registar pozivamo Vas da nas kontaktirate.
Za dodatne informacije ili zahtjev za upis u registar javite se na: registar.nmb@gmail.com ili na http://www.hddn.hlz.hr/hr/index.php .
Website:
Email Address:
Secondary Email Address:
Contact Number:
+385 12367801
Address:
Referral Centre for paediatric neuromuscular diseases of Croatian Ministry of health - at the Division of paediatric neurology
University Hospital Centre Zagreb (KBC Zagreb)
University of Zagreb Medical School in cooperation with Croatian Alliance of M
Zagreb
Croatia
10000
Language(s) spoken
Primary language
- Croatian
Registry type
- Paediatric
Geographical coverage
- National
TGDOC Membership
- TGDOC Core Member Registry for SMA
- TGDOC Core Member Registry for DMD
- TGDOC Affiliate Member Registry for Non-Dystrophic Myotonias
- TGDOC Affiliate Member Registry for LGMD
- TGDOC Affiliate Member Registry for FSHD
- TGDOC Affiliate Member Registry for DM1
- TGDOC Affiliate Member Registry for CMT
- TGDOC Affiliate Member Registry for CMS
- TGDOC Affiliate Member Registry for CMD
Data entry
- Clinician Entered
