National registries for DMD, SMA and DM

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").

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")

More information coming soon! In the meantime, please contact Soledad Monges.

More information coming soon! In the meantime, please contact Soledad Monges.

The Australian Myotonic Dystrophy (DM1) Registry has been developed to collate a patient's DM1 gene sequence and clinical information about their disease. The Registry provides an important enabling tool for clinicians and clinical trial sponsors to quickly identify patients suitable for each study, particularly those therapeutic strategies that target specific genetic defects.

Please contact Hugh Dawkins for further details.

In Australia, Duchenne Foundation Australia, in conjunction with the Muscular Dystrophy Association, the Muscular Dystrophy Foundation, other support groups and affected families, made representations to state and federal politicians and health ministers to establish a national registry.

The Australian SMA registry in currently under development and it is envisaged that this will be fully operational soon.

Once up and running the information gathered will then be added to the global TREAT-NMD registry.

In the meantime, please contact Hugh Dawkins .

The Belarusian Patient Registries for SMA and DMD are currently in the planning stages. Efforts are underway to set them up in a collaboration between doctors and the NMD section of the patient organization Belapdiimi.

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.

The Belgian patient registry for Duchenne/Becker muscular dystrophy is located at the Scientific Institute of Public Health, Epidemiology Section, in Brussels.

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

DMD/BMD and SMA patient registries are being planned to be set up in Brazil.

The first holder and sponsoring organisation of the registries will be Sao Paulo University, Department of Child Neurology, Sao Paulo City.

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

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.

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.

The Chinese Genetic Disease Registry (CGDR) is a China-wide registry of people diagnosed with a genetic disease, especially for DMD/BMD and SMA. It collects important medical information from patients across the country to improve the understanding of genetic disease and accelerate the development of new therapies. CGDR is located at General Hospital of Chinese Armed Police Force in Beijing, which was started in September 2012. For more information please visit the CGDR website at www.dmd-registry.com or contact the CGDR National Office at dmd2012@126.com.

Croatian national registry of patients with Duchenne and Becker Muscular Dystrophy and Spinal Muscular Atrophy type I, II, III and IV is currently under construction.

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 patient registry Myotonic Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses.

The Czech and Slovak patient registry for Duchenne/Becker Muscular Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses, and is sponsored by the Czech Duchenne Parent Project.

The Czech patient registry for Facioscapulohumeral Muscular Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses.

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.

More information about the Danish registries can be obtained by contacting either  Ole Gredal or Jes Rahbek who are both from the National Danish Rehabilitation Centre for Neuromuscular Diseases.

More information about the Danish registries can be obtained by contacting either  Ole Gredal or Jes Rahbek who are both from the National Danish Rehabilitation Centre for Neuromuscular Diseases.

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

For more information, please contact Dr Ilona Lind , who is currently based at Children´s Clinic of Tartu University Hospital.

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.

The Finnish NMD registry for DMD and SMA patients is maintained by The Finnish Neuromuscular Disorders Association in collaboration with Finnish universities.

The French Registry for Myotonic Dystrophy is a national initiative in France that specialists caring for myotonic dystrophy patients contribute to. It is purely based on professional report during clinical consultations.

The French registry of patients with a dystrophinopathy (Duchenne or Becker Musucular Dystrophy) is hosted at the Laboratory of Molecular Genetics, Inserm U827 (Director: Pr Mireille Claustres) in Montpellier and co-sponsored by the French Association for neuromuscular diseases (AFM).

A registry for French Patients is currently in development and is expected to launch shortly.

For information in the meantime please visit the website:  www.fshd.fr

The French SMA database is under construction. This UMD-SMA database will be located in Montpellier.

As part of the international TREAT-NMD initiative, a national self-report and professional-report registry for all German DM (1 & 2) patients is being established in a collaboration between the expert neuromuscular clinical centres, MD-Net Germany and the Deutsche Gesellschaft für Muskelkranke.

The German patient registry for Duchenne Musucular Dystrophy is located at the Ludwig-Maximilians University in Munich and co-sponsored by the German Duchenne Parents Project benni&co.

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 Duchenne Muscular Dystrophy is located at the Department of Molecular Genetics and Diagnostics of the National Institue of Environmental Health.

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.

Two DMD patient registries are being set up in India.
 
Dr V. Viswanathan, Consultant Paediatric Neurologist at the Kanchi Kamakoti CHILDS Trust Hospital, has established a registry with support of the Indian MDA.

The Congenital Muscular Dystrophy International Registry (CMDIR) was created by the patient advocacy group Cure CMD to identify the global CMD population for the purpose of raising awareness, improving standards of care, accelerating clinical trials and in the future finding a treatment or cure. Individuals with all forms of CMD can register in the registry.   

The Iranian DMD/BMD Registry, IDBR, is a national registry for individuals with DMD/BMD conditions. The IDBR began its work with support of Molecular Medicine Network by collecting personal clinical and genetic information in 2010 from individuals with Duchenne or Becker Muscular Dystrophies.

There are two patient registries in Italy for patients with DMD

1) Italian DMD/BMD registry
2) Italian Registry of Persons affected by NeuroMuscular Diseases

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 Japanese DMD registry  (Remudy; REgistry of MUscular Dystrophy)  is located at National center of Neurology and Psychiatry in Tokyo.

The UPA! Duchenne Registry serving Latin America and Spanish speaking community patients is managed and supported by the association UPA! cura Duchenne.

The Dutch patient registry for Duchenne and Becker Musucular Dystrophy is located at the University Medical Centre in Leiden. The investigator in charge is Janneke van den Bergen.

A registry for Dutch patients affected with facioscapulohumeral dystrophy (FSHD) is under development by the dept. of Neurology, Radboud University Nijmegen Medical Centre in collaboration with the Dutch Association for FSHD. The registry will be launched shortly.

The website will be featuring various tools to measure the patient's FSHD fingerprint in daily life and will give insights in FSHD. This way, collaboration between patients and researchers will increase knowledge of FSHD with the ultimate goal to treat symptoms and improve quality of life.

For the time being, patients with FSHD will find up to date information on www.fshd.nl.

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 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 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 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 National DMD and other NMD Registry for Peruvian patients is managed and supported by the Collaboration Network named UPA! Red Hispana in collaboration with Asociación de Distrofia Muscular del Perú.

The Polish Registry of Patients with Neuromuscular Diseases is 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 Polish Registry of Patients with Neuromuscular Diseases is 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 Polish Registry of Patients with Neuromuscular Diseases is 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 Portuguese patient registry for Duchenne Muscular Dystrophy is located at the Centro de Genética Médica Jacinto Magalhães, INSA, in Porto, and is supported by the Portuguese Neuromuscular Patients Association.

The DMD/BMD Patients' Registry is an online database for Romanian patients diagnosed with Duchenne / Becker Muscular Dystrophy.

The registry of NMD patients in Russia is under construction.
At the moment there are two independent databases - in Moscow and in St Petersburg. In the future, a combination of these two databases from Moscow and SpB is planned.

The registry of NMD patients in Russia is under construction.
At the moment there are two independent databases - in Moscow and in St Petersburg. In the future, a combination of these two databases is planned.

The Serbian patient registry for Myotonic dystrophy type 1 and 2 (DM1 and DM2) is under construction at the moment. The DM1 and DM2 registry is located at the Institute of Neurology, Medical Faculty, University of Belgrade and is going to be in form of professional report.

The Serbian patient registry for Duchenne Muscular Dystrophy (DMD) is under construction  at the moment. The Duchenne registry is located at the Clinic for Pediatric and Adolescent  Neurology and Psychiatry, Medical Faculty, University of Belgrade and is going to be in form of professional report.

The Spanish registry of DMD patients is being prepared by collaboration between different professionals from neuropediatrics, neurology and genetics.

The Spanish patient registry for Spinal Muscular Atrophy is finishing the process of being set up. This is a professional registry that will include data from genetically confirmed SMA patients. The registry is part of the GENAME Project co-sponsored by GENOMA ESPAÑA and FUNDAME (Parents SMA Foundation).

A test version of the register/database, based at NKO in Lund, has just been completed. The register will be based on professional report.

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.

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.

The Children's hospital neurology department in Skopje, Macedonia, is planning to set up TREAT-NMD patient registries for DMD and SMA.

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.

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.

Ukrainian DMD register started its work in July 2009 and in September 2009 had its first patient whose mandatory items profile complies with global TREAT-NMD register requirements.

The Ukrainan patient registry for Spinal Musucular Atrophy is located at the Institute of Neurology, Psychiatry and Narcology of Academy of Medical Science of Ukraine in Kharkiv and co-sponsored by the Kharkiv Foundation “Children with spinal muscular atrophy”

As part of the international TREAT-NMD initiative, a national registry for all UK DM1 patients has been established in collaboration between the expert clinical centres, the Muscular Dystrophy Campaign and the Myotonic Dystrophy Support Group.

The UK Myotonic Dystrophy Patient Registry is being run from Newcastle University by Prof Hanns Lochmüller. The primary goals of the Registry are to facilitate clinical research in Myotonic dystrophy and to allow clinicians and researchers to better understand the condition.

For more information see www.dm-registry.org/uk or contact the Registry Curator for further details.

An information leaflet has been produced and can be downloaded here.

The UK Duchenne registry is located at www.dmdregistry.org where parents and those living with Duchenne can register online.

The UK FSHD patient Registry is run from Newcastle University with support from the Muscular Dystrophy Campaign and in close collaboration with other clinical centres and patient representatives across the country.

To regsiter please visit www.fshd-registry.org/uk or contact the registry curator for more information.

The UK SMA registry is located at Newcastle University and is co-sponsored by The Jennifer Trust. The investigator in charge is Professor Hanns Lochmüller and the database curator is Dr Brigitta von Rekowski.

The Myotonic Dystrophy Family Registry

The Myotonic Dystrophy Family Registry is a web-based registry created specifically for individuals with myotonic dystrophy (DM1 and DM2). MDFR is unique in that it will not only help researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, but will also allow anyone who is registered to have access to the collected data (de-identified only), from academic and pharmaceutical researchers to individuals or families living with DM.

The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy

This registry, which is funded by the US National Institutes of Health and based at the University of Rochester, has the primary goal of facilitating research in DM and FSHD by establishing a mechanism for contact between researchers and patients.

There are two patient registries in the USA for patients with DMD.
The United Dystrophinopathy Project is located at the University of Utah.
The DuchenneConnect Patient Registry for the United States is managed by Parent Project Muscular Dystrophy (PPMD), United States.

The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy

This registry, which is funded by the US National Institutes of Health and based at the University of Rochester, has the primary goal of facilitating research in DM and FSHD by establishing a mechanism for contact between researchers and patients.

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

The National Register of Venezuela for patients with Duchenne Muscular Dystrophy is administered and funded by UPA! cura Duchenne in collaboration with the Children Foundation Duchenne de Venezuela.