The GBS|CIDP Foundation International is pleased to work with several notable organizations and observational study networks to advance our shared mission of improving diagnosis, treatment, and care for GBS, CIDP, and variants patients.
International Guillain-Barre Outcomes Study (IGOS)
This study aims to identify clinical and biological determinants and predictors of disease course and outcome in individual patients with Guillain-Barré syndrome, as early as possible after onset of disease. This information will be used to understand the diversity in clinical presentation and response to treatment of GBS. This information will also be used to develop new prognostic models to predict the clinical course and outcome accurately in individual patients with GBS. To address these research questions it is required to conduct a prospective study with standardized collection of clinical data and biomaterials from a large group of well-defined GBS patients during a long follow-up period. Such an extensive study in a relatively rare disease as GBS can be addressed only by intensive international collaboration.
Learn more about IGOS – https://gbsstudies.erasmusmc.nl/participants
INCbase is a collaborative academic study that intends to explore CIDP. This study is a registry. It does not involve investigational medications or procedures. Instead, INCbase will collect a standard set of information from large numbers of patients with CIDP across the globe. This information will be periodically updated within INCbase, so that it can be better understood how the disease changes over time. Data will be stored in a secure state-of-the-art modular research database which has been developed with patient privacy and investigator autonomy as first priorities. Investigators that are part of the INCbase network will have the opportunity to use the database as part of unprecedented international collaborative studies. The data may also be used on a smaller scale to securely conduct single center studies or even to help physicians take care of CIDP patients during routine clinical practice. INCbase is led by an international collaborative of CIDP experts. The investigators anticipate that this study will lead to an understanding of the diagnosis, prognosis, and treatment of CIDP in way not previously possible.
To learn more about INCBase – https://www.incbase.org/
Peripheral Nerve Society
The Peripheral Nerve Society (PNS) is an international non-profit organization of scientists, physicians, and other healthcare providers working together to investigate and treat diseases of the peripheral nervous system. The mission is of the PNS is to improve the lives of people with peripheral neuropathies throughout the world. The PNS supports basic and clinical research, education, and standards of care in cooperation with patients and those developing treatments.
Within the PNS, the Foundation also participates on the Inflammatory Nerve Consortium (INC) special interest group.
Learn more about PNS – https://www.pnsociety.com/i4a/pages/index.cfm?pageid=1
The American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM)
The American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) is a nonprofit membership association dedicated to the advancement of neuromuscular (NM), musculoskeletal, and electrodiagnostic (EDX) medicine. Members of the AANEM—primarily neurologists and physical medicine and rehabilitation (PMR) physicians—are joined by allied health professionals and PhD researchers working to improve the quality of medical care provided to patients with muscle and nerve disorders. The mission of the AANEM is to improve the quality of care for patients experiencing abnormal movements, muscle cramps, numbness/tingling, pain, and weakness. AANEM members are dedicated to diagnosing and managing a variety of nerve and muscle diseases, and we are dedicated to serving them.
Learn more about the AANEM – https://www.aanem.org/About
World Federation of Neurology
The WFN’s mission is to foster quality neurology and brain health worldwide. The World Federation of Neurology was formed in Brussels in 1957, as an association of national neurological societies. Today WFN represents 120 professional national societies in all regions of the world, and each society registers its own individual member neurologists with us. The delegates, one from each national society, elect the trustees and officers.
Learn more about WFN – https://wfneurology.org/about-us