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Clinical Trial Network: 

ENMC was involved in the establishment of a Clinical Trial Network to support Clinical Trials. This Clinical Trial Network was headed by Prof. Richard Hughes and Dr. Michael Rose.

Through this ENMC Clinical Trial Network, practical tools were offered for selection, design and set up of clinical trials. These tools included;

  • systematic reviews on trials performed by the Cochrane neuromuscular disease review group
  • a clinical trial registry on trials completed, ongoing and planned
  • information on diagnostic criteria
  • information on outcome measures
  • access to an investigator network
  • guidance with application for funding
  • the facilitation of planning meetings for clinical trials through ENMC workshops.

 The ENMC Clinical Trial Network supported the following Cochrane reviews: 

Title

Authors

 Intravenous immunoglobulin for CIDP

 van Schaik I, Winer J, de Haan R, Vermeulen M

 Immunosuppressive agents for polymyositis and dermatomyositis

 Choy E, Lecky B, Winer J, Hoogendijk J

 Corticosteroids for chronic inflammatory demyelinating polyradiculoneuropathy

 Mehndiratta MM, Hughes RAC

 Immunotherapy for IgM anti-Myelin-Associated Glycoprotein-associated peripheral neuropathies

 Lunn MPT, Nobile-Orazio E

 Drug treatment for facioscapulohumeral muscular dystrophy

 Rose M, Tawil R

 Glucocorticoid corticosteroids for Duchenne muscular dystrophy

 Manzur AY, Kuntzer T, Pike M

 Treatment for ocular myasthenia gravis

 Benatar M, Kaminski H

 Spinal surgery for scoliosis in Duchenne muscular dystrophy

 Ka Leung Cheuk D, Wong V, Wraige E, Elliott T, Cole A, Baxter P, Mayowe V

 Immunosuppressive treatment for non-systemic vasculitic neuropathy

 Vrancken A, Notermans N, Wokke J, Hughes RAC, Said G

 Antioxidants for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND)

 Orrell R, Lane R, Ross M

 Plasma exchange for chronic inflammatory demyelinating polyradiculoneuropathy

 Mehndiratta MM, Hughes RAC, Agarwal P

 Corticosteroids for myasthenia gravis

 Schneider-Gold C, Hohlfeld R, Toyka K, Gajdos P

 Plasma exchange for myasthenia gravis

 Gajdos P, Toyka K

 Recombinant human insulin-like growth factor-1 for amyotrophic lateral sclerosis (ALS)/motor neuron disease(MND)

 Mitchell JD, Borasio G

 Intravenous immunoglobulin for myasthenia gravis

 Gajdos P, Toyka K

 Treatment for spasticity in amyotrophic lateral sclerosis/motor neuron disease

 Ashworth N, Deforge D, Satkunam L

 Creatine for neuromuscular disease

 Kley R, Tarnopolsky M, Vorgerd M

 Treatment for Eaton-Lambert myasthenic syndrome

 Maddison P, Newsom-Davis J

 Scapular fixation for facioscapulohumeral muscular dystrophy

 Mummery C, Copeland S, Rose M

 Psychostimulants for hypersomnia in myotonic dystrophy

 Annane D, Miller RG, Barnes P

 Strength training and aerobic exercise training for muscle disease

 van der Kooi E, Lindeman E, Riphagen I

 Pharmacological and nutritional treatment for McArdle's disease (Glycogen storage disease V)

 Quinlivan, R, Beynon R

 Drug therapy for chronic idiopathic axonal polyneuropathy

 Vrancken A, van Schaik I, Hughes R, Notermans N

 Ciliary neurotrophic factor for amyotrophic lateral sclerosis(ALS)/motor neuron disease(MND)

 Bongioanni P Reali C, Sogos V

 Intravenous immunoglobulin for multifocal motor neuropathy

 Van Schaik I, Van den Berg Rh, de Haan R, Vermeulen M

 Immunosuppressive agents for multifocal motor neuropathy

 Umapathi T, Hughes RAC, Nobile-Orazio E, Leger J

 Cytotoxic drugs and interferons for chronic inflammatory demyelinating polyradiculoneuropathy

 Hughes RAC, Swan A, van Doorn P

 Exercise for peripheral neuropathy

 White C, Turner-Stokes L, Pritchard J

 Treatment for mitochondrial myopathies and encephalopathies

 Chinnery P, Turnbull DM, Thorburn D, Majamaa K

 Enteral feeding for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND)

 Langmore SE, Kasarkis E, Manca L

 Rehabilitation interventions for foot drop in neuromuscular disease

 Sackley C, Hoppitt T, Disler P, Turner-Stokes L, Wade D

 Treatment for Fisher Syndrome, Bickerstaff's brainstem encephalitis and related disorders

 Overell J, Willison H, Odaka M, Yuki N, Hsieh  ST

 Treatment for dysphagia in chronic muscle disease

 Hill M, Hughes T, Milford C

 Symptomatic drug therapy for myotonia

 Trip J, Faber CG, Drost G, van Engelen BGM

 Treatment for IgG and IgA paraproteinaemic demyelinating neuropathy

 Allen D, Lunn M, Niermeijer J, Nobile-Orazio E

 

The following workshops were facilitated by the ENMC Clinical Trial Network: 

ENMC Workshops
June 2007 152 European Spinal Muscular Atrophy Randomized Clincal Trial II (EUROSMART II)
March 2007 149 Planning Phase I/II Clinical Trials Using Systemically Delivered AON in DMD
November 2006 145 Planning for an international trial of steroid dosage regimes in DMD
April 2005 136 Charcot-Marie-Tooth
February 2005 134 SMA
January 2005 132

Planning steroid dosage trials in DMD

December 2004 131 Outcomes PN
October 2004 129 CIDP and MMN
April 2004 124 Treatment of Duchenne Muscular Dystrophy
February 2004 123 Myotonic Dystrophy
October 2003 120 Clinical Trials of Minocycline in Amyotrophic Lateral Sclerosis (ALS)
October 2003 119 Trial design in adult idopathic inflammatory myopathies

 

The ENMC Clinical Trials Network has now been superseded by other initiatives. ENMC continues to offer some of the Clinical Trial Network´s resources while others are now continuing in other forms;