National SMA registries

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

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

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")

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

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.

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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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.

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

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.

The Bulgarian patient registry for Duchenne/Becker Musucular Dystrophy and Spinal Muscular Atrophy is located at University Hospital Alexandrovska, Clinic of Neurology in Sofia.

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.

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.

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

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.

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.

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

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).

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.

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 Hungarian patient registry for Spinal Muscular Atrophy is located at the Department of Molecular Genetics and Diagnostics of the National Institue of Environmental Health.

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.

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.

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

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

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

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

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.

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.

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

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”.

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

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

MDA

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.

Register slovenskih otrok z živčno-mišičnimi obolenji

Registry of Slovenian children with neuromuscular diseases

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.

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.

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.

The Children's Hospital Neurology Department in Skopje, Macedonia, is planning to set up TREAT-NMD patient registries for DMD and SMA.

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.

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/

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.

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