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What's new in the
world of Research
updated
17 February, 2006
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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!
Considering participating
in a clinical trial?
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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.

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Trials recruiting
patients
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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-amino-pyridine (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. Increasing
nerve conduction may improve 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 in a large 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
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- 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)
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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
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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. TM is also related to GBS..
Bacterial
infections promote T cell recognition of self-glycolipids.
De Libero, G., Moran, A.P., et al. Immunity, Vol. 22,
June, 2005, pages 763772. [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]
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]
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]
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: 05.2003
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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. 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.
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Your donations
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one if you've been helped thru "All about GBS"!
These donors have helped keep this site running in 2004-5:
Pam Graf, US
Konrad Tiburzy, GDR
Gabriele Wennemer, France |
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