Your Donations in Action

Findings of 2016 GBS|CIDP Research Grant Support Article Published by EAN

In 2016 The GBS|CIDP Foundation awarded a research grant to Eduardo Nobile-Orazio, MD, PhD, FAAN, Professor of Neurology Neuromuscular and Neuroimmunology Service at Milan University. Dr. Nobile-Orazio’s 2016 study titled: An Italian Multicenter Network for the diagnosis and therapy of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and of its variants, contributed to the 2019 article: Risk factors for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP): antecedent events, lifestyle and dietary habits. Data from the Italian CIDP Database., published by the EAN (European Academy of Neurology).

Update: GBS|CIDP Foundation Research 2016 Grant Recipient, Dr. Eduardo Nobil-Orazio, published in Journal of Neurology, Journal of Neuroimmunology, and Wiley Online Library

Read more

Impact of environmental factors and physical activity on disability
and quality of life in CIDP [PDF]

Relevance of diagnostic investigations in chronic inflammatory
demyelinating poliradiculoneuropathy: Data from the Italian
CIDP database [PDF]

Sensitivity and specificity of a commercial ELISA test for anti-MAG
antibodies in patients with neuropathy [PDF]

Risk factors for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP): antecedent events, lifestyle and dietary habits. Data from the Italian CIDP Database [PDF]

Now Accepting Applications for 2020 Research Grants

As part of the GBS|CIDP Foundation International’s mission to provide education and support research, we offer research grants to qualified applicants. Grants are made possible through the benevolence of many sources, including the Helen S. Manheimer Research Fund, contributions from individuals who have been personally touched by GBS or CIDP and by several commercial sources. Through the generosity of these contributors, to whom the Foundation is most grateful, we are able to offer a Research Grant Program. The GBS|CIDP Foundation International has worldwide representation, sharing resources with local support group chapters nationally and internationally.

Foundation interests include GBS, both demyelinating and axonal variants, Miller Fisher syndrome, CIDP, Multifocal Motor Neuropathy, and others. Research interests cover a broad range of subjects including development of methods to more rapidly diagnose these disorders, creation of educational and communication programs to inform patients and families of the Foundation’s availability, identification of mechanisms involved in the pathogenesis of family disorders, development of more effective treatments to limit the disease process, prevent complications and reduce long-term adverse sequelae.

Learn More about GBS|CIDP Foundation International 2020 Research Grant Opportunity

Welcome to Fall Advocacy

Coming Soon- Fall Colors!

Congressional Recess officially ended on September 9th, and the Northeast is already seeing leaves fall from the trees (no color change, yet). Now that Washington, D.C. is back to being fully operational, we have a lot of great things to report on! Check out our highlights below, and stay up to date with all things GBS|CIDP Advocacy Related by following me on Twitter (@ChelsOnTheHill).

GBS is Eligible To Be Studied Under DOD PRMRP Grant Funding

This one has been a long time coming! We prioritized asking our Senators to include GBS on the list of conditions eligible to be studied by grants given through the Department of Defense’s Peer Reviewed Medical Research Program (DOD PRMRP) during Hill Day (almost 4 months ago).

We have finally received the official word that GBS was included in the Senate’s appropriations bill for next year’s DOD PRMRP! This is great news for the community as it gives our researchers a chance to compete for grants where there are typically less applicants. In fact, GBS|CIDP Global Medical Advisory Board Member Dr. Kazim Sheikh recently received a grant from this program. One of my favorite things about advocacy work is seeing Research & Advocacy come together – and this is EXACTLY THAT!

THANK YOU to the Hill Day crew for making this happen!

H.R. 2905 Update

Thanks to the August Advocacy and continued work of our community writing letters to their Representatives, we currently have 15(!!!!) cosponsors of HR 2905. Most importantly, we have continued to draw support from both Democrats and Republicans. This bill is bipartisan, and it is truly great to see party lines set aside for our patient community. Here is the current list of cosponsors:

  • Rep. Blumenauer, Earl [D-OR-3]
  • Rep. Holding, George [R-NC-1]
  • Rep. Butterfield, G. K. [D-NC-1
  • Rep. Kelly, Robin L. [D-IL-2]         
  • Rep. Garamendi, John [D-CA-3]
  • Rep. Sewell, Terri A. [D-AL-7]     
  • Rep. Marchant, Kenny [R-TX-24]
  • Rep. Davis, Susan A. [D-CA-53]  
  • Rep. Kelly, Mike [R-PA-16]          
  • Rep. Luria, Elaine G. [D-VA-2]
  • Rep. Evans, Dwight [D-PA-3]      
  • Rep. Matsui, Doris O. [D-CA-6]  
  • Rep. Smith, Adrian [R-NE-3]        
  • Rep. Price, David E. [D-NC-4]
  • Rep. Kind, Ron [D-WI-3]

If your Congressperson’s name is on this list, make sure you thank them with an email, tweet, or phone call. If they are not on this list, send them a letter by visiting our Advocacy Action Center (or emailing me for other creative ways to get in touch with their office).

We will continue to work with key Senators (meaning ones that serve on the Finance Committee) in the hopes of adding a Senate Companion bill. As a quick reminder, we need a bill to pass in both the House and the Senate for this to become enacted.

Other Random Updates

Lisa, myself, and our Health and Medicine of Washington Partners recently spent a day on Capitol Hill asking Representatives to become cosponsors of HR 2905. We were received with positive vibes and warmth. There was also a sense of “let’s get this done!” among the people we spoke with. We hope that the 12 offices we met with will become cosponsors soon!

NEW at all of our fall walks, chapter meetings, and regional conferences (Hello, Boston) is an Action Center “To-Go”! The registration desk at all of our fall events will have a form for you to complete, which will then come back to me. I will take your information from that form and turn it into a letter to your Congressperson asking them to cosponsor HR 2905. So, next time you are at a Foundation event, make sure you complete a form and encourage everyone around you to do the same!

I am collecting volunteers for our newly launched State-level advocacy program. If you are interested in learning more about the State Government + how to get involved, send me a message at

I can’t wait to continue our work together! Feel free to contact me at anytime with questions, suggestions, or enthusiasm for advocacy.
~Chelsey, Advocacy Manager

Research in CIDP: Are we making progress?

By Jeffrey A. Allen, MD
Member, GBS|CIDP Foundation Global Medical Advisory Board

CIDP as a named disease entity is now about 4 decades old. The laboratory data that helps define the disease, nerve conduction studies and in some cases cerebral spinal fluid and nerve biopsy, is even older; and the initial description of what has now come to be known as CIDP was probably first published well over 100 years ago. CIDP evidence based treatments, corticosteroids, IVIG, and plasma exchange, have been known to be effective since the 1980’s and 1990’s.  In 2018 progress of CIDP research can seem… stagnant.

Research in CIDP: Are we making progress? By Jeffrey A. Allen, MD

And yet, despite appearances, scientific achievements within the field are unquestionable. Physicians and scientists from around the world have passionately engaged all aspects of the disease from the most fundamental immunologic derangements to better defining the clinical spectrum of CIDP to exploration of new CIDP treatment options. Thus far in 2018 over 140 CIDP papers have been published in peer reviewed medical journals1. The publication growth by decade, reflective of intellectual curiosity, has been steadfast. In 1990 a total of 31 papers were published, followed by 84 in 2000, and 107 in 2010. Just in the last several years we have learned that about 10% of those with CIDP harbor one of two autoantibodies called neurofascin 155 or contactin 1. These antibodies target a specific portion of peripheral nerve and may have important treatment implications. We’ve learned the challenges that are encountered when diagnosing CIDP, and have a better understanding on how to avoid diagnostic pitfalls. From a treatment perspective we have very recently learned that subcutaneous immunoglobulin (SCIG) is safe and effective for CIDP maintenance therapy, but that unfortunately the immunomodulating medication fingolimod does not have a role in CIDP treatment. While certainly not comprehensive of all that has been learned over the last couple years, it is examples like this that offer insight into the progress being made and what direction the field is headed. That direction is one of a greater understanding of what makes one person’s CIDP different than the next. What is the underlying immunologic problem, and what does that tell us about the diagnosis, prognosis, and treatment of any individual person.

Around the world there are currently a multitude of studies that are exploring ways to get more out of our current CIDP treatments. These studies include the ProCID and DRIP studies, largely being conducted in Europe, which will help us better understand how IVIg dose and administration frequency influence efficacy. In the Netherlands the ongoing IOC trial will help us understand how often remission occurs in CIDP. The GRIPPER study conducted in the US may shed insight on how CIDP symptoms fluctuate in between IVIg infusions. Each of these studies anticipates conclusion in 2018 or 2019.  Collectively they will inform us on how to personalize IVIg treatment: how to get more out of the treatment for those that need it, and how to get patients off treatment if it is no longer needed. Looking farther out, the OPTIC trial conducted in the Netherlands and UK will explore the roll of combining IVIG treatment with corticosteroids. This trial is expected to conclude in 2023.

Equal to better understanding how to improve our current treatment protocols is identification of new treatment options. There are many many ways to suppress or manipulate the immune system. While some of these interventions may achieve the desired result of suppressing the inflammatory attack on nerves affected by CIDP, the risk of aggressive immunosuppression can be substantial and unnecessary. The goal is to maximize efficacy while at the same time minimize risk, with escalation of risk proportional to disease severity and prior treatment history. One line of treatment that has fostered some degree of enthusiasm is that of B cell depletion therapy with rituximab. A randomized controlled trial of rituximab in CIDP is currently underway in Italian centers. US physicians have expressed similar interest in exploring this treatment pathway, and a clinical trial of B cell depletion at US centers is currently in development.  While the role of B cell depletion in the treatment of CIDP is presently unknown, the hope is that these trials will help us learn which groups of patients within the broader context of CIDP might benefit from rituximab or similar medications. The hope also is to understand how these interventions can be tailored to individual patients such that unnecessary risks can be avoided.

In 2019, patients with CIDP throughout the world can anticipate initiation of a CIDP study that will be known as INCbase. INCbase will not explore a specific treatment or intervention in CIDP, but rather is a registry designed to learn more about those affected by the disease. One of the challenges of finding treatments in CIDP is the realization that CIDP has many faces, and those faces may be mediated by different immunologic insults.  The objective of INCbase is to better understand what defines the faces of CIDP. What symptoms constitute the clinical boundaries of CIDP? What testing is helpful in the diagnosis? Why do some treatments help some people, but not others? How does the pathophysiology of the disease differ from patient to patient? Participants in INCbase will simply be asked a series of standardized questions and have a standardized series of metrics collected, such as grip strength. In some cases blood may be collected as well. Participants will be followed on a periodic basis over a couple years. Ultimately this information will be critical in the development of treatment protocols that are specific to any individual patient, at any given stage of their disease.

While many of us, patients and clinicians alike, yearn for an escalated pace of progress in the field of CIDP, the knowledge gathered even within just the last several years is undeniable.  We are all in debt to those affected by CIDP that participate in the research that helps advance the field forward. Patients interested in research participation are encouraged to talk to their doctor about programs that might be locally available. Physicians at GBS/CIDP Centers of Excellence can be particular helpful in this regard.  The field is trending toward personalization of therapy, whether that be by getting more out of our currently available interventions or by discovering which patients might be candidates for different treatment options that are both effective and safe. A better understanding of the clinical and laboratory boundaries that define CIDP and how individual patients under the CIDP umbrella differ will add immensely to treatment personalization. We all eagerly await the results of actively enrolling CIDP trials and look forward to initiation of new studies, such as INCbase, identification of new novel antibodies, and clinical trials of B cell depletion therapy. Collectively these studies have the capacity to change the landscape of CIDP management in ways unknown in the not too distant past. We are making progress.

  1. Pubmed search of “chronic inflammatory demyelinating polyneuropathy OR CIDP” accessed on 10/5/2018.

2018 Research Grant Finalists Announced

Research is critical to serving the cause and the community. The GBS-CIDP Foundation International believes in supporting research by funding grants for projects that contribute to the knowledge and advancement of treatment of GBS|CIDP and variants of the condition.

We are pleased to announce our 2018 Research Grant Awardees are as follows: 

1. Principal Investigator: Elisabetta Babetto, Ph.D., Research Assistant Professor

The Research Foundation for SUNY on behalf of U. at Buffalo

Project: “Targeting Wallerian-like degeneration in GBS mouse models”

Synopsis: Axon degeneration accounts for the most debilitating clinical symptoms of Guillain Barré Syndrome (GBS). Our goal is to explore the mechanisms of axon loss in this condition, by testing the hypothesis that axon degeneration in GBS is governed by a defined molecular program amenable for therapeutic intervention. Specifically we will test whether inactivation of proteins, known to dictate axon loss after experimental injury, affords axon terminal protection in murine models of GBS.

2. Principal Investigators: Luana Benedetti, MD, PhD and  Lucilla Nobbio, PhD

University of Genova, ITALY

Project: Sphingomyelin dosage in GBS/CIDP patients: biomarker validation in a multicenter, prospective study

Synopsis: The identification of a biomarker specific and sensitive to improve diagnostic accuracy, to monitor disease activity, to stage patients, and to select specific treatments is a prime goal for the GBS/CIDP Community. Due to the encouraging results we obtained by dosing SM levels in the CSF of patients affected by GBS and CIDP, we propose the present study whose major significance is to validate our results on a sizeable and carefully selected number of patients.

3. Principal Investigator: Paolo Ripellino, MD, Neurologist

Neurocenter of Southern Switzerland

Project: (IGOS) in Switzerland: a deeper look into HEV-induced GBS

Synopsis: This study will increase the amount of clinical and prognostic data of the IGOS consortium with the inclusion of patients from an important area located in the middle of Europe. The high quality of the Swiss health care system will allow researchers to obtain accurate data. The systematic collection of acute phase samples in a biobank will be fundamental for future international, cooperative studies. The subproject about the role of HEV is innovative because – although so far neglected – HEV is an increasing, preventable (by appropriate cooking and blood donors testing) disease and this infection is associated to GBS.

4. Principal Investigator: Luis Querol MD PhD

Hospital de la Santa Creu i Sant Pau, Barcelona

Project:  Disease-specific Biomarkers In Inflammatory Neuropathies

Synopsis: Inflammatory neuropathies (IN) are disorders in which disease-specific biomarkers are not required or diagnostic purposes, leading to disease heterogeneity. We discovered the association of anti-contactin-1 antibodies to a specific CIDP subset using an unbiased approach. This strategy has also proven effective in antibodies against NF155 and nodal neurofascins in CIDP, in which our group has also played a central role. The discovery of paranodal antibodies hasboosted translational research in the field, including the description of specific pathology, genetic background (DRB1*15 association with NF155 antibodies), response to treatment and animal models, supporting the idea that the classification of IN according to disease-specific biomarkers would make IN research and care more efficient.

5. Principal Investigator: Dr Laura Zambreanu, MD, MRCP

National Hospital for Neurology and Neurosurgery, UK

Project:  Intravenous immunoglobulin and intravenous methylprednisolone as optimal induction treatment in CIDP (OPTIC trial)

Synopsis:  Most CIDP patients are treated with regular intravenous immunoglobulin (IVIg) because of fast improvement and rare adverse events, but IVIg is expensive. Corticosteroid treatment is associated with longer time to improvement and more side effects, but may lead to long-term remission1,2. We intend to participate in a multicentre, randomized, double-blind, placebo-controlled superiority trial in patients with active CIDP. The primary objective is to assess whether combining IVIg and intravenous methylprednisolone (IVMP) leads to more frequent long-term remission in CIDP compared to IVIg alone. Patients will be recruited in the Netherlands and the UK.


Congratulations to all and thank you for your continued commitment to research in the area of GBS|CIDP and variants of the condition.

See more on Research