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Total 27 results found since Jan 2013.

The Cure VCP Scientific Conference 2021: Molecular and clinical insights into neurodegeneration and myopathy linked to multisystem proteinopathy-1 (MSP-1)
In this report, we summarize the major topics presented at this conference by a range of experts.PMID:35405261 | DOI:10.1016/j.nbd.2022.105722
Source: Neurobiology of Disease - April 11, 2022 Category: Neurology Authors: Michelle A Johnson Jacob A Klickstein Richa Khanna Yunzi Gou Cure VCP Disease Research Consortium Malavika Raman Source Type: research

Workshop report: 247th ENMC International Workshop: “Muscle Magnetic Resonance Imaging: Implementing muscle MRI as a diagnostic tool for rare genetic myopathy cohorts.”
In September, 2019, 19 participants from 9 countries attended the 247th European Neuromuscular Center (ENMC) workshop in Hoofddorp, The Netherlands, to discuss the standardization of muscle magnetic resonance imaging (MRI) protocols, the development of a muscle MR imaging databank, and increasing the education and training of key MR imaging features of genetic myopathies for the wider medical community. The group included researchers and clinical experts in neuromuscular disease (NMD) MR imaging, as well as a young researcher and a patient representative from the European Patients Forum (EPF).
Source: Neuromuscular Disorders - August 25, 2020 Category: Neurology Authors: Jodi Warman Chardon, Jordi Diaz-Manera, Giorgio Tasca, Volker Straub, MRI workshop study group Tags: Workshop report Source Type: research

247th ENMC International Workshop: Muscle magnetic resonance imaging - Implementing muscle MRI as a diagnostic tool for rare genetic myopathy cohorts. Hoofddorp, The Netherlands, September 2019
On September 2019, 19 participants from 9 countries attended the 247th European Neuromuscular Center (ENMC) workshop in Hoofddorp, The Netherlands, to discuss the standardization of muscle magnetic resonance (MR) imaging protocols, the development of a muscle MR imaging databank, and increasing the education and training of key MR imaging features of genetic myopathies for the wider medical community. The group included researchers and clinical experts in neuromuscular disease (NMD) MR imaging, as well as a young researcher and a patient representative from the European Patients Forum (EPF).
Source: Neuromuscular Disorders - August 25, 2020 Category: Neurology Authors: Jodi Warman-Chardon, Jordi Diaz-Manera, Giorgio Tasca, Volker Straub, on behalf of of the MRI workshop study group Tags: Workshop report Source Type: research

250th ENMC International Workshop: Clinical trial readiness in nemaline myopathy 6 –8 September 2019, Hoofdorp, the Netherlands
On September 6 –8, 2019, a group of 18 scientists and doctors, along with two patient advocates, from 11 different countries, convened in Hoofddorp, The Netherlands. The aim of the workshop was to plan for a thorough and reliable natural history and outcome measures study of congenital nemaline myopathy, as the basis for future therapy trials. After a welcome from Alexandra Breukel, Carsten Bönnemann and Laurent Servais, Alan Beggs and Carina Wallgren-Pettersson gave an overview of the genetics and clinical spectrum of nemaline myopathy (NM).
Source: Neuromuscular Disorders - August 14, 2020 Category: Neurology Authors: Sarah B. Neuhaus, Carina Wallgren-Pettersson, Carsten G. B önnemann, Ulrike Schara, Laurent Servais, the nemaline working group Tags: Workshop report Source Type: research

250th ENMC International Workshop: Clinical trial readiness in nemaline myopathy 6 – 8 September 2019, Hoofdorp, The Netherlands
On September 6-8, 2019, a group of 18 scientists and doctors, along with two patient advocates, from 11 different countries, convened in Hoofddorp, The Netherlands. After a welcome from Alexandra  Breukel, Carsten Bönnemann and Laurent Servais, Alan Beggs and Carina Wallgren-Pettersson gave an overview of the genetics and clinical spectrum of nemaline myopathy (NM).
Source: Neuromuscular Disorders - August 14, 2020 Category: Neurology Authors: Sarah B. Neuhaus, Carina Wallgren-Pettersson, Carsten G. B önnemann, Ulrike Schara, Laurent Servais, the nemaline working group Source Type: research

1st Sitting Workshop for neuromuscular disorders Denmark, 30 September - 1 October 2019
From 30th September to 1st October 2019 a workshop was organized on sitting for persons with neuromuscular disorders, specifically focusing on Duchenne muscular dystrophy (DMD), Spinal muscular atrophy (SMA), congenital muscular dystrophy (CMD) and myopathy (CM), in Musholm Ferie-Sport-Konference in Kors ør, Denmark. Recruitment for occupational therapists was done in Western European countries; participating countries were Denmark, Norway, Sweden, Belgium, France and the Netherlands. A pre-workshop questionnaire was sent around concerning the use of standard evaluating methods and possible interve ntions.
Source: Neuromuscular Disorders - May 6, 2020 Category: Neurology Authors: Imelda JM de Groot, Ulla Werlauff, Working group Sitting in NMDs Tags: Workshop report Source Type: research

1st Sitting Workshop for Neuromuscular disorders. Denmark 30 September – 1 October 2019
From 30th September till 1st October 2019 a workshop was organized on sitting of persons with neuromuscular disorders, specifically focusing on Duchenne muscular dystrophy (DMD), Spinal muscular atrophy (SMA), congenital muscular dystrophy (CMD) and myopathy (CM), in Musholm Ferie-Sport- Konference in Kors ør, Denmark. Recruitment for occupational therapists was done in western European countries, participating countries were Denmark, Norway, Sweden, Belgium, France and the Netherlands. A pre-workshop questionnaire was send around concerning the use of standard evaluating methods and possible interve ntions.
Source: Neuromuscular Disorders - May 6, 2020 Category: Neurology Authors: Imelda JM de Groot, Ulla Werlauff, Working group sitting in NMD Tags: Workshop report Source Type: research

214th ENMC International Workshop Establishing an international consortium for gene discovery and clinical research for Congenital Muscle Disease Heemskerk, The Netherlands, 6 –18 October 2015
At this ENMC meeting, a multidisciplinary group of 26 participants, including 22 clinical and basic science researchers from 11 different countries and 4 patient advocacy representatives convened to discuss the formation of a formal consortium to improve diagnosis and gene discovery for congenital myopathy (CM) and congenital muscular dystrophy (CMD). The mission statement of the consortium is that “every individual with a congenital muscle disease deserves a genetic diagnosis”. The workshop consisted of three sessions: (1) identifying existing diagnostic and gene discovery infrastructure (databases, analysis platforms...
Source: Neuromuscular Disorders - July 12, 2019 Category: Neurology Authors: Sandra Donkervoort, James J. Dowling, Jocelyn Laporte, Daniel MacArthur, Carsten G. B önnemann, 214th ENMC workshop participants Tags: Workshop report Source Type: research

214th ENMC International Workshop: Establishing an international consortium for gene discovery and clinical research for Congenital Muscle Disease, Heemskerk, the Netherlands, 6 –18 October 2015
At this ENMC meeting, a multidisciplinary group of 26 participants, including 22 clinical and basic science researchers from 11 different countries and 4 patient advocacy representatives convened to discuss the formation of a formal consortium to improve diagnosis and gene discovery for congenital myopathy (CM) and congenital muscular dystrophy (CMD). The mission statement of the consortium is that “every individual with a congenital muscle disease deserves a genetic diagnosis”. The workshop consisted of three sessions: (1) identifying existing diagnostic and gene discovery infrastructure (databases, analysis platforms...
Source: Neuromuscular Disorders - July 12, 2019 Category: Neurology Authors: Sandra Donkervoort, James J. Dowling, Jocelyn Laporte, Daniel MacArthur, Carsten G. B önnemann, 214th ENMC workshop participants Tags: Workshop report Source Type: research

237th ENMC International Workshop: GNE myopathy – current and future research Hoofddorp, The Netherlands, 14–16 September 2018
Clinicians, researchers, industry and patient group representatives (in total 25 members of the study group from 12 countries) gathered in Hoofddorp in September 2018 to discuss current knowledge and perspective research in GNE myopathy (previously known as Nonaka disease, Quadriceps Sparing Myopathy, Distal Myopathy with Rimmed Vacuoles or Hereditary inclusion body myopathy type 2). GNE myopathy is an -rare autosomal recessive disease caused by bi-allelic mutations in the GNE gene (UDP-N-acetyl) −2-epimerase/N-acetylmannosamine kinase).
Source: Neuromuscular Disorders - February 28, 2019 Category: Neurology Authors: Oksana Pogoryelova, J. Andoni Urtizberea, Zohar Argov, Ichizo Nishino, Hanns Lochm üller, ENMC workshop study group Tags: Workshop report Source Type: research

237th ENMC International Workshop: GNE myopathy current and future research Hoofdorp, The Netherlands, 14 – 16 September 2018
Clinicians, researchers, industry and patient group representatives (in total 25 members of the study group from 12 countries) gathered in Hooffdorp in September 2018 to discuss current knowledge and perspective research in GNE myopathy (previously known as Nonaka disease, Quadriceps Sparing Myopathy, Distal Myopathy with Rimmed Vacuoles or Hereditary inclusion body myopathy type 2). GNE myopathy is an -rare autosomal recessive disease caused by bi-allelic mutations in the GNE gene (UDP-N-acetyl)-2-epimerase/N-acetylmannosamine kinase).
Source: Neuromuscular Disorders - February 28, 2019 Category: Neurology Authors: Oksana Pogoryelova, J. Andoni Urtizberea, Zohar Argov, Ichizo Nishino, Hanns Lochm üller, ENMC workshop study group Tags: Workshop report Source Type: research

Juvenile idiopathic inflammatory myopathies: A clinicopathological study with emphasis on muscle histology.
Conclusion: JIIMs were rare and JDM was the most common subtype. Muscle biopsy evaluation as per ENMC criteria characterized the subgroups. PMID: 30706861 [PubMed - in process]
Source: Indian Journal of Pathology and Microbiology - January 1, 2019 Category: Pathology Authors: Challa S, Hui M, Jakati S, Uppin MS, Rajasekhar L, Kannan MA, Lingappa L, Jagarlapudi MMK Tags: Indian J Pathol Microbiol Source Type: research

Interprofessional education (IPE) for respiratory care in neuromuscular disease (NMD) is feasible, and improves confidence in clinical practice
Conclusions: IPE offers a promising approach to training in respiratory care in NMD. Further work is required to determine whether IPE improves collaboration and clinical outcomes.
Source: European Respiratory Journal - November 19, 2018 Category: Respiratory Medicine Authors: Hare, A., Chatwin, M., Field, D., Tan, H.-L., Simonds, A. Tags: Medical education, web and internet Source Type: research

234th ENMC International Workshop: Chaperone dysfunction in muscle disease, December 8-10th 2017, Naarden, Netherlands
Twenty participants from Australia, Belgium, Denmark, Finland, France, Germany, Italy, Israel, The Netherlands, Sweden, UK and the USA met in Naarden, The Netherlands from December 8th-10th, 2017. This group included clinicians, clinical trialists, basic scientists, industry and patient representatives. Patients were represented by the Muscular Dystrophy Association and Alexander's Way (BAG3 associated myopathy). The goals were to discuss the role of protein chaperones in normal muscle function, muscle disease and future therapies.
Source: Neuromuscular Disorders - September 24, 2018 Category: Neurology Authors: Conrad C. Weihl, Bjarne Udd, Michael Hanna, Workshop Participants Tags: Workshop Report Source Type: research