Spinal muscular atrophy
There are many registries that have been set-up across the world that specifically collect data from patients with SMA.
Some of this data comprises of an internationally agreed core dataset which sets out the information that all national registries should collect in order for their data to be directly comparable in the TREAT-NMD Global Registry. The Global SMA Registry collects data from a number of national registries which relates to over 3,000 patients.
If you are a patient (or parent of a patient) with SMA and would like to register in a SMA Registry then you should do this via the registry in your country if one is available.
Patient Registries
SMA Registry – Algeria
An Algerian NMD Patient Registry has now been opened, and patients with DMD/BMD or SMA, or their families, can find more information about this registry on the website: http://shifa.ash.com (section ‘ …
SMA Registry – Argentina
The Argentinian SMA registry is now active. For more information please contact Soledad Monges.
SMA Registry – Australia
The Australian Spinal Muscular Atrophy Registry collates clinical and genetic information about this disease. The establishment of the Registry was made possible by the inter-jurisdictional cooperatio …
SMA – Austria
The German patient registry for Spinal Muscular Atrophy is located at the Ludwig-Maximilians University in Munich and co-sponsored by the German SMA patient organisation. The investigator in charge is …
SMArtCARE Initiative – Austria
SMArtCARE is a joint initiative of neurologists, child neurologists, and patients’ organizations. The aim of SMArtCARE is to collect longitudinal “real-world data” on all available SMA patients indepe …
SMA registry – Belarus
The Belarusian Patient Registries for SMA and DMD has not been developed yet. However, there are particular efforts to set up these registries in the near future.
SMA registry – Belgium
More information coming soon! In the meantime, please contact Peter Van den Bergh.
NMD Brazilian Registry – Brazil
DMD/BMD and SMA patient registries are being planned in Brazil. The first holder and sponsoring organisation of the registries will be Sao Paulo University, Department of Child Neurology, Sao Paulo Ci …
SMA Registry – Bulgaria
The Bulgarian patient registry for Duchenne/Becker Musucular Dystrophy and Spinal Muscular Atrophy is located at University Hospital Alexandrovska, Clinic of Neurology in Sofia.
SMA registry – Canada
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the countr …
SMA Registry for Chile
La Corporación FAME Chile es una asociación de pacientes, con personalidad jurídica, sin fines lucro que agrupa a las familias con niños y adultos afectados con Atrofia Muscular Espinal, y cuya misión …
Chinese SMA Patient Registry
Meier Advocacy & Support Center for SMA, founded in January 2016, is the first non-profit organization in China, solely dedicated to supporting SMA families throughnetwork, information, and servic …
DMD registry – Croatia
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 Cent …
SMA registry – Croatia
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 is being developed by the Referral Cent …
SMA registry – Czech Republic
The Czech and Slovak patient registry Spinal Muscular Atrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses.
The National Rehabilitation Centre for Neuromuscular Diseases
More information about the Danish registries can be obtained by contacting Ulla Werlauff from the National Danish Rehabilitation Centre for Neuromuscular Diseases.
NMD registry (DMD, BMD, FSHD, LGMD, GNE, DM) – Egypt
The Egyptian NMD registry is now open for registrations from DMD/BMD, LGMD, GNE, DM, CMD and FSHD patients in Egypt. Registrations from SMA patients will be possible in the near future. We also welcom …
EGYPT PED-NMD – Pediatric NMD Registry (BMD, DMD, SMA) – Egypt
EGYPT PED-NMD: National Registry for Egyptian Pediatric Treating Neuromuscular Diseases Data base for Egyptian patients with SMA as a part of National Registry for Egyptian Pediatric Treating Neuromus …
SMA registry – Estonia
Estonia is planning to set up TREAT-NMD patient registries for DMD/BMD and SMA.
Suomen Lihastautirekisteri – The Finnish TREAT-NMD Patient Registry
The Finnish NMD registry for DMD and SMA patients is maintained by The Finnish Neuromuscular Disorders Association in collaboration with Finnish universities. If you would like more information, then …
SMA registry – France
The French registry for patients with SMA is located in Montpellier. The database (known as the UMD-SMN1 France database) is financed by AFM (Association Française contre les Myopathies) and is a resu …
SMA registry – Germany
The German patient registry for Spinal Muscular Atrophy is located at the Ludwig-Maximilians University in Munich and co-sponsored by the German SMA patient organisation.
SMArtCARE Initiative – Germany
SMArtCARE is a joint initiative of neurologists, child neurologists, and patients’ organizations. The aim of SMArtCARE is to collect longitudinal “real-world data” on all available SMA patients indepe …
SMA Registry – Hungary
The Hungarian patient registry for Spinal Muscular Atrophy is located at the Department of Molecular Genetics and Diagnostics of the National Institue of Environmental Health.
Italian Neuromuscular Registry
Register of patients with neuromuscular diseases The Registry collects personal, genetic and clinical data of patients suffering from neuromuscular diseases and arises from the need to order and updat …
SMA Registry – Italy
The Italian Registry of NMD Patients is sponsored by the Associations Aisla, ASAMSI, Famiglie SMA, UILDM and the Telethon Foundation; it houses data of persons affected by DMD/BMD and SMA.
NMS datu kolekcija (Latvian NMD Registry)
For information on the Latvian DMD registry please contact Ieva Micule or Signe Setlere.
Lebanese Neuromuscular Disease Registry
The Lebanese Neuromuscular Disease Registry is managed by L.A.N.D. (Lebanese Association for Neuromuscular Diseases) a support group that will spread awareness and support patients and families affect …
SMA registry – Lithuania
The Lithuanian registry for DMD and SMA patients is in the planning phase. More information will be made available in due course.
SMA Registry – Macedonia
The Children’s Hospital Neurology Department in Skopje, Macedonia, is planning to set up TREAT-NMD patient registries for DMD and SMA.
SMA registry – Malaysia
The Malaysian registry for DMD and SMA is in the planning phase. More information will be made available in due course.
SMA registry – Mexico
La Asociación Mexicana de Atrofia Muscular Espinal (AMAME) se dedica al apoyo a los pacientes con Atrofia Muscular Espinal desde hace más de 5 años. Actualmente nos enfocamos en proporcionar el diagnó …
SMA registry – Netherlands
Based in the University Medical Centre Utrecht the registry will start as a professional report, but we are currently investigating the possibility to make it a combination of self and professional re …
New Zealand Neuromuscular Disease Registry
The NZ NMD Registry covers all neuromuscular disorders that it’s primary sponsor, MDANZ, supports.
SMA registry – Norway
The Norwegian registry for DMD and SMA is in under construction. More information will be made available in due course.
Muscular Dystrophy Registry of Pakistan
The Muscular Dystrophy Registry of Pakistan has been setup with a goal to improve outcomes and quality of life in patients with muscular dystrophies and related neuromuscular disorders The registry is …
SMA registry – Romania
The Romanian SMA registry is a professional reported database for patients diagnosed with SMA.
SMA registry – Russia
The Russian Patient Registry for Spinal Muscular Atrophy (SMA) is a Russia-wide registry of people diagnosed with this desease, contains clinical and genetic information. The initial set up of the Reg …
SMA Registry – Serbia
The Serbian patient registry for Spinal Muscular Atrophy (SMA) is located at the Clinic for Pediatric and Adolescent Neurology and Psychiatry, Medical Faculty, University of Belgrade and is professio …
Registry of Slovenian Children with Neuromuscular Diseases
Register slovenskih otrok z živčno-mišičnimi obolenji Registry of Slovenian children with neuromuscular diseases
SMA Registry – Spain
The Spanish Patient Registry for Spinal Muscular Atrophy (SMA) includes data from genetically confirmed SMA patients. The initial set up of the Registry was part of the GENAME Project co-sponsored by …
Neuromuskulära sjukdomar i Sverige (Neuromuscular Disorders in Sweden)
This registry is based on professional reporting system and now includes SMA, DM1, congenital myopathies, congenital muscular dystrophies, and LGMD. For further information, please contact Björn Lindv …
Swiss Registry for Neuromuscular Disorders
The Swiss Registry for Neuromuscular Disorders collects medical information about persons with a neuromuscular disease. For example, the registry collects information about people affected by spinal m …
SMA registry – Taiwan
A Taiwanese registry for SMA is in the planning phase. A Taiwanese registry for SMA is in the planning phase. The registry is being set up by Dr Wen-Chen Liang, Kaohsiung Medical University Hospital, …
KUKAS
Turkish patient registries for DMD and SMA are being set up in Ankara and Istanbul, at the Hacettepe University, Faculty of Health Sciences, Department of Physical Therapy and Rehabilitation, Muscle D …
SMA Registry – Ukraine
The Ukrainan patient registry for Spinal Musucular Atrophy is located at the Institute ofNeurology, Psychiatry and Narcology of Academy of Medical Science of Ukraine in Kharkiv andsponsored by the Kha …
UK SMA Patient Registry
The UK SMA registry is located at Newcastle University and is sponsored by the SMA Support UK. The investigator in charge is Dr Chiara Marini Bettolo.
Please note there is no benefit to you in registering in more than one country, since the data from each country’s national registry is sent to the TREAT-NMD Global SMA Registry.
