- Research & trials -
updated 17-Feb-2006

This page will contain information on global research into issues of interest to GBS/CIDP patients and their healthcare providers. Older information will be replaced as new information becomes available, so please check often!
Please email if you have information to include on this page!

Choose a category ---------------------- Participating in a clinical trial Trials recruiting patients Research being prepared On-going research Completed studies Allsorts

Want to participate in a clinical trial?

Why volunteer to participate in a clinical trial? Bounty-Hunting and Finder's Fees [reg. required, free] - Do researchers suffer from a conflict of interest ? FAQs to consider before you sign up, glossary of terms. A clinical trials register for Europe - Who is researching what, where, and where can I find out about it? Its not that easy, not everybody registers their trials. Read why.... Survey of Study Volunteer Experiences - Persons who participated in a clinical trial/research study are invited to enter this survey, whether or not you participated to completion or dropped out. The survey's purpose is to understand your views about participating in the trial/study. top

Trials recruiting patients

Hematopoietic Stem Cell Support in Chronic Inflammatory Demyelinating Polyneuropathy Medication followed by stem cell infusion to assess whether this produces a normal immune system. Early Mechanical Ventilation for Guillain Barré Syndrome Can early mechanical ventilation prevent hospital-acquired pneumonia in adults with GBS? Residual fatigue after apparent recovery from GBS This study aims to assess fatigue and quality of life in post-GBS patients, as well as to find effective treatment for residual fatigue. The Changes of Cytokines in Guillain Barré Syndrome: the Correlation With Clinical Manifestations and Skin Innervation Treatment of CIDP With Gamunex®, Immune Globulin Intravenous (Human), 10% Caprylate/Chromatography Purified The study is enrolling CIDP patients, age 18 or older, for a 1-year period. It will evaluate the efficacy of treatment with Gamunex, compared with placebo, on the effect of functional disability. Results are expected by 2006. CIDP - Study to evaluate the efficacy and safety of an experimental drug in CIDP patients. Safety, Tolerability, and Efficacy of Rituximab in Patients with Anti-Glycoconjugate Antibody-Mediated Demyelinating Neuropathy: A Double-Blind Placebo-Controlled Randomized Trial This study will test the safety and effectiveness of the drug Rituximab in treating MGUS/PDN. Patients with MGUS have an abnormal protein called monoclonal IgM immunoglobulin that attacks nerve myelin sheath. Immuno-suppressive drugs or Ig infusions can produce mild and transient improvement, but the benefits are not significant. The abnormal immunoglobulin protein in MGUS is produced by white cells called B lymphocytes. Rituximab appears promising in patients with demyelinating neuropathy associated with production of antibodies from B lymphocytes directed against certain nerve proteins. Protocol number: 03-N-0057 posted here 05.2003 Assessment of Chronic Guillain-Barre Syndrome Improvement with Use of 4-aminopyridine [registration required] This US study will assess the usefulness and safety of 4-aminopyridine (4-AP) in patients suffering chronic functional deficits from GBS. 4-AP is a potassium channel blocker that could potentially improve nerve conduction, particularly across partially demyelinated axons. It is felt that by increasing nerve conduction there will be improved motor performance as well as decreased fatigue. Over 20% of GBS patients have permanent residual motor deficits that affect their daily life. NLM Identifier NCT00056810 posted here: 05.2003 The effect of exercise on peripheral neuropathies. This London-based research project is investigating the effect of a 12-week exercise program on strength, fitness and quality of life. Volunteers with peripheral neuropathies required to take part. You may be suitable for the study if you have either: - GBS and are more than 1 year after onset, or - CIDP with no periods of worsening in your condition over the last 6 months. The results of this study will be used to help design a large randomised controlled trial into the effect of home exercise on disability in peripheral neuropathy. posted here: 03.2003 Diagnostic Evaluation of Patients with Neuromuscular Diseases posted here: 03.2003 top

Research being prepared

- Plasma exchange for chronic inflammatory demyelinating polyradiculoneuropathy (Cochrane Protocol) - Rehabilitation interventions for foot drop in neuromuscular disease (Cochrane Protocol) - Tramadol for neuropathic pain (Cochrane Protocol)

On-going research

Research Lost in Katrina Flood [reg. required, free] Flood waters engulfing New Orleans laboratories may have damaged not only research facilities, but also destroyed irreplaceable data, tissue samples, and animals involved in ongoing medical studies. Learn more about the implications of research disrupted by hurricane Katrina. Pain: Hope Through Research How research fuels growing understanding of this syndrome, which in turn fuels further research in various treatments. Rewiring the Body The emerging vision of the body electric, and how high-tech implants can increase neurostimulation, which eliminates or alleviates some symptoms of diseases such as depression, epilepsy etc. posted 06.2005 Neurorecovery, Inc. Announces Clinical Trial Schedule For 2005 Ampydin (4AP) is currently in late Stage Two human trials for chronic Guillain-Barre syndrome. Stage Three trials are expected to begin in spring 2005. posted 04.2005 Genome Comparison of Four Campylobacter Strains Yields Genetic Markers In a study that will benefit medical and food-safety research, scientists used comparative genomics to find out why some strains of Campylobacter – which cause more than 400 million cases of gastrointestinal disease each year – are more virulent than others. posted 02.2005 Multiple Campylobacter Genomes Sequenced Sequencing the genomes of several Campylobacter strains and species have led to the discovery of differences and similarities between them. This will enable scientists to learn what makes the bacteria tick, and to develop new ways to monitor and control Campylobacter in the food chain and in human infection. posted 02.2005 Research turning up the heat on fowl bacteria In the US, where undercooked poultry and meat, unpasteurised milk and untreated water are the most common causes of diarrhea, microbiologists are researching exactly how C. jejuni causes food-poisoning, in order to try to prepare a vaccine. posted: 01.2005 Cattle linked to common stomach bug New Zealand experts find that cattle carry Campylobacter. Contact with animals, drinking untreated milk and water, and swimming in contaminated water appears to be "equally, if not more responsible" than eating chicken and other foods for most cases. posted: 01.2005 top

Completed studies

IL-6 linked to transverse myelitis and multiple sclerosis Researchers have discovered a molecule that causes an autoimmune disease in the central nervous system, called transverse myelitis (TM), that is related to multiple sclerosis and Guillain-Barré syndrome. Bacterial infections promote T cell recognition of self-glycolipids. De Libero, G., Moran, A.P., et al. Immunity, Vol. 22, June, 2005, pages 763–772. [read review] Electrophysiological signs of permanent axonal loss in a follow-up study of patients with Guillain-Barre syndrome. Dornonville de la Cour C, Andersen H, Stalberg E, Fuglsang-Frederiksen A, Jakobsen J. Muscle Nerve. 2005 Jan;31(1):70-7. Axonal loss occurs in a substantial number of GBS patients and is associated with permanent muscle weakness caused by insufficient reinnervation. Possible patterns of pathology are discussed in relation to the macro-EMG findings. posted here: 06.2005 Residual neuropathy in long-term population-based follow-up of Guillain-Barre syndrome. de la Cour CD, Jakobsen J. Neurology. 2005 Jan 25;64(2):246-53. Residual neuropathy affecting large- and medium-sized myelinated fibers endures long after the acute attack of Guillain-Barre syndrome in approximately half of all patients, leads to motor and sensory dysfunction, and shows a trend toward impairing self-reported physical health status. posted here: 06.2005 Study Documents Decline in Rare Paralytic Disorder Linked to Influenza Vaccination The number of reported cases of GBS that occur following influenza vaccination has decreased over the past 12 years. posted here: 05.2005 Cancer trial participants rarely told of results Clinical trial participants want to know the results of their studies. Communication with patients following participation in a clinical trial is one small, though important, piece of the overall care of patients who participate in trials. Randomised, Double-Blind, Placebo-Controlled, Exploratory, Safety Study of Recombitant beta- interferon la Given by subcutaneous Injection three times a week to Patients Suffering from Guillain-Barre Syndrome. [registration required, free] UK trial investigates the safety and tolerability of treatment with REBIF for up to 24 weeks in patients suffering from GBS. REBIF has never used at this dose or in patients with GBS. The trial also investigates the effect of treatment with REBIF on overall disability in patients suffering from GBS. Duration: 1998-2001 Contact person: Dr JB Winer ID: N0265041711 posted here: 05.2003 Phase III Randomized, Double-Blind, Placebo-Controlled Study of Intravenous Immune Globulin for Chronic Inflammatory Demyelinating Polyneuropathy [registration required, free] Compare the response of previously untreated CIDP patients to intravenous immune globulin vs. placebo. NLM Identifier NCT00004772 posted here: 05.2003 Second immunoglobulin dose Guillain-Barre syndrome trial [registration required, free] Does a second imunoglobulin course offer a clinically important advantage over a single course in patients who are still severely affected with Guillain Barre syndrome 2 weeks after the start of the first course? Duration: 2000-2002 Contact: Professor RAC Hughes ID: N0116069211 posted here: 03.2003 top

Allsorts

NHS R&D Health Technology Assessment Programme The UK National Health System HTA programme collaborates with consumers in identifying areas into which research is needed: a drug, a procedure, a piece of equipment, a process, etc. The needs-led programme seeks suggestions for research into areas of genuine uncertainty or important knowledge gaps. Check out the Call for Proposals, updated often. posted here: 03.2003 The Myelin Project Research into myelin repair. top

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