Spinal muscular atrophy

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.

National patient registries for SMA

NMD registry - New Zealand
NMD registry - New Zealand

The NZ NMD Registry covers all neuromuscular disorders that it's primary sponsor, MDANZ, supports.

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Email

Website www.mda.org.nz

 

SMA registry - Denmark
SMA registry - Denmark

More information about the Danish registries can be obtained by contacting Ulla Werlauff from the National Danish Rehabilitation Centre for Neuromuscular Diseases.

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Email

Website rcfm.dk

 

SMA Registry - Algeria
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 "La Recherche")

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Email

 

SMA Registry - Argentina
SMA Registry - Argentina

The Argentinian SMA registry is now active. For more information please contact Soledad Monges.

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Email

Call 541148011327

 

SMA Registry - Australia
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 cooperation of the state clinical and genetic testing services across the country with coordination and key support from the Office of Population Health Genomics, Department of Health WA.

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Email

Call +61 892226842

 

SMA - Austria
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 Dr. Maggie Walter and you can contact the registry here if you have any questions. Patients with SMA can register online at www.treat-nmd.de.

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SMA registry - Belarus
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.

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SMA registry - Belgium
SMA registry - Belgium

More information coming soon! In the meantime, please contact Peter Van den Bergh.

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SMA registry - Brazil
SMA 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 City.

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Email

Call +5521998596900

 

SMA Registry - Bulgaria
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.

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Email

Call +359888448020

 

SMA registry - Canada
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 country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.

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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 es acoger, contener, orientar y organizar el acceso de las familias a la información, estudios clínicos, desarrollo de nuevas terapias y a su inserción en la sociedad chilena.

FAME Chile is an organisation which brings together families who have children and adults affected by Spinal Muscular Atrophy (SMA). Their mission is to welcome, support, and organise the families’ access to information, clinical studies, development of new therapies and their insertion into Chilean society.

More Info
Email

Call +56229337235
Website www.famechile.cl

 

Chinese SMA Patient Registry
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 services. Families of SMA China is its predecessor.

The Chinese SMA Patient Registry is sponsored and maintained by Meier Advocacy & Support Center for SMA.


It collects clinical and genetic information of individuals affected by Spinal Muscular Atrophy to promote clinical trials in China.
Meier Advocacy & Support Center for SMAWeb: www.meier.org.cn; www.fsmachina.orgTel: +86 4006060749 Email: martin@meier.org.cn

More Info
Email

Website www.fsmachina.org

 

SMA Registry - Columbia

Email

Call 313 312 71 89
Website www.famecolombia.org

 

SMA registry - Croatia
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 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.

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SMA registry - Czech Republic
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.

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Email

 

SMA registry - Estonia
SMA registry - Estonia

Estonia is planning to set up TREAT-NMD patient registries for DMD/BMD and SMA.

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SMA registry - Finland
SMA registry - Finland

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 please contact:

+358-44 736 1030 (from abroad) or 044 736 1030 (inside Finland).

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Email

Call +358-44 736 1030

 

SMA registry - France
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 result of a major national effort involving all French molecular diagnostic laboratories and reference centers for neuromuscluar diseases.

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SMA registry - Germany
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.

More Info
Email

Call +49 89 440057451

 

SMA Registry - Hungary
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.

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Email

Call 362151380

 

Muscular Dystrophy Association registry - India
Muscular Dystrophy Association registry - India

Dr V. Viswanathan, Consultant Paediatric Neurologist at the Kanchi Kamakoti CHILDS Trust Hospital, has already established a registry with support of the Indian MDA and this is accepting patients.

For further details please contact Dr Viswanathan.

More Info
Email

Call 9840094882

 

SMA Registry - Italy
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.

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SMA registry - Latvia
SMA registry - Latvia

The Latvian Registry for DMD and SMA is in the planning phase. More information will be made available in due course.

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SMA registry - Lithuania
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.

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SMA registry - Malaysia
SMA registry - Malaysia

The Malaysian registry for DMD and SMA is in the planning phase. More information will be made available in due course.

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SMA registry - Mexico
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 diagnóstico molecular a todas las personas que no tiene acceso a el sin ningún costo. Se realiza el registro de estos pacientes para conocer la cantidad de personas afectada con esta enfermedad en México y poder apoyarles en la mejor manera posible.

The Asociación Mexicana de Atrofia Muscular Espinal (AMAME) works for the benefit of the patients with Spinal Muscular Atrophy (SMA) over 5 years. Our work is based on providing the molecular diagnose to all the patients that don´t have access to it without any cost. We are doing the registry of the patients with SMA all around Mexico and helping them in the best way possible

More Info
Email

Call 011523336479920
Website www.amameac.org

 

SMA registry - Netherlands
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 report and so is still under construction.

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Email

 

SMA registry - New Zealand
SMA registry - New Zealand

The NZ Neuromuscular Disease Registry covers all neuromuscular conditions including Duchenne and Becker muscular dystrophies (DMD and BMD), spinal muscular atrophy (SMA), myotonic dystrophy (DM) and Charcot-Marie-Tooth disease (CMT).

Please contact registry curator Miriam Rodrigues or visit the registry website for further details.

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Website www.nmdregistry.co.nz

 

SMA registry - Norway
SMA registry - Norway

The Norwegian registry for DMD and SMA is in under construction. More information will be made available in due course.

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SMA registry - Poland
SMA registry - Poland

The Polish Registry of Patients with Neuromuscular Diseases was created at the Department of Neurology, Medical University of Warsaw within the project "Clinical and genetic characteristics of neuromuscular diseases for future application of gene therapy”.

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SMA registry - Romania
SMA registry - Romania

The Romanian SMA registry is a professional reported database for patients diagnosed with SMA.

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SMA registry - Russia
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 Registry was part of the "Nadezhda" Neuromuscular Assosiation and renewed and modified in 2014 by SMA Family Foundation. The curator of the Registry is Dr. Svetlana Artemieva from Research Clinical Institute of Pediatrics in Moscow.

You can contact the registry here (register@f-sma.ru) if you have any questions.
Information on the Russian SMA Registry and forms for the patent with SMA (informed consent form to participate in the registry and a questionnaire) are available at the address: http://f-sma.ru/32.html



Российский реестр пациентов со спинальной мышечной атрофией (СМА) это единая база данных пациентов со СМА по всей России. Реестр позволяет учитывать количество пациентов и их состояние, содержит клиническую и генетическую информацию, способствовать совершенствованию медицинской помощи и имеющихся методов лечения заболевания.
С 2014 г. реестр пациентов со СМА ведется российским фондом «Семьи СМА», - организацией, занимающейся развитием помощи пациентам со спинальной мышечной атрофией в России и является продолжением работы, начатой Ассоциацией нервно-мышечных заболеваний "Надежда". Куратором регистра является С.Б. Артемьева – врач-невролог, зав.отделением неврологии НИКИ Педиатрии РНИМУ им.Пирогова, г.Москва

По любым вопросам, связанным с реестром Вы можете написать на эл.почту: register@f-sma.ru
Информация о российском реестре СМА и анкета реестра для пациентов со СМА (информированное согласие на участие в реестре и вопросник) доступны по адресу: http://f-sma.ru/32.html

More Info
Email

Call 74955444989
Website Click here to visit website

 

SMA Registry - Russian

MDA

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Email

Call 79163358974

 

SMA Registry - Serbia
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 professional report.

More Info
Email

Call 381112658355

 

Registry of Slovenian Children with Neuromuscular Diseases
Registry of Slovenian Children with Neuromuscular Diseases

Register slovenskih otrok z živčno-mišičnimi obolenji

Registry of Slovenian children with neuromuscular diseases

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Website www.pednevro.pedkl.si

 

SMA Registry - Spain
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 GENOMA ESPAÑA and FundAME (Parents SMA Foundation) and renewed and modified in 2015 by FundAME.

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SMA Registry - Switzerland
SMA Registry - Switzerland

The Swiss patient registry for Duchenne Muscular Dystrophy and Spinal Muscular Atrophy is a professional-report registry located at the Neuropediatric Unit, Centre Hospitalier Universitaire Vaudois (CHUV) in Lausanne.

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Email

 

SMA registry - Taiwan
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, Kaohsiung.

More information will be made available in due course.

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SMA Registry - Macedonia
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.

More Info
Email

Call +38970358582

 

SMA registry - Turkey
SMA registry - Turkey

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 Disorders Unit in Ankara, and at İstanbul University, İstanbul Faculty of Medicine, Department of Neurology, Physical Therapy and Rehabilitation Unit.

More Info

Call 0312 3052525 / 179

 

UK SMA Patient Registry

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Email

Call +44 (0)191 241 8605

 

SMA Registry - Ukraine
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 Kharkiv Foundation “Children with spinal muscular atrophy”.

The investigator in charge is Dr. Andriy Shatillo, MD. PhD, neurologist and you can contactthe registry at shatil@ukr.net or registry@csma.org.ua if you have any questions. TheInformation about registry, patient information and informed consent, self‐report form andinvitation to for consultation can be found at http://www.csma.org.ua/foundation/reg.html.On‐line registration is available at http://csma.org.ua:8080/

 


Украинский реестр пациентов со СМА образован совместно Институтом неврологии, психиатрии и наркологии АМНУ и Фондом «Дети со СМА» в Харькове. Медицинский куратор Реестра - Шатилло Андрей Валерьевич, невролог. Вы можете задать интересующие вопросы почтой shatil@ukr.net или registry@csma.org.ua. Информация о Реестре, Информационное согласие пациента, Форма заочной регистрации и Приглашение для консультации можно найти на странице http://www.csma.org.ua/foundation/reg.html.Он-лайн регистрация доступна http://csma.org.ua:8080/

More Info
Email

Call +380503640673
Website

 

SMA registry - United Kingdom
SMA registry - United Kingdom

The UK SMA registry is located at Newcastle University and is sponsored by the SMA Support UK. The investigator in charge is Professor Hanns Lochmüller.

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SMA registry - United States of America
SMA registry - United States of America

The International Spinal Muscular Atrophy Patient Registry is located at Indiana University School of Medicine, Indianapolis, Indiana, USA.

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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.

 
12 Apr 2017