International Guillain-Barre Syndrome Outcome Study: protocol of a prospective observational cohort study on clinical and biological predictors of disease course and outcome in Guillain-Barre syndrome
Por:
Jacobs, BC, van den Berg, B, Verboon, C, Chavada, G, Cornblath, DR, Gorson, KC, Harbo, T, Hartung, HP, Hughes, RAC, Kusunoki, S, van Doorn, PA, Willison, HJ, Illa I., Querol L.A., Zivkovic, Sasa A.
Publicada:
1 jun 2017
Resumen:
Guillain-Barre syndrome (GBS) is an acute polyradiculoneuropathy with a highly variable clinical presentation, course, and outcome. The factors that determine the clinical variation of GBS are poorly understood which complicates the care and treatment of individual patients. The protocol of the ongoing International GBS Outcome Study (IGOS), a prospective, observational, multicenter cohort study that aims to identify the clinical and biological determinants and predictors of disease onset, subtype, course and outcome of GBS is presented here. Patients fulfilling the diagnostic criteria for GBS, regardless of age, disease severity, variant forms, or treatment, can participate if included within 2 weeks after onset of weakness. Information about demography, preceding infections, clinical features, diagnostic findings, treatment, course, and outcome is collected. In addition, cerebrospinal fluid and serial blood samples for serum and DNA is collected at standard time points. The original aim was to include at least 1,000 patients with a follow-up of 1-3 years. Data are collected via a web-based data entry system and stored anonymously. IGOS started in May 2012 and by January 2017 included more than 1,400 participants from 143 active centers in 19 countries across 5 continents. The IGOS data/biobank is available for research projects conducted by expertise groups focusing on specific topics including epidemiology, diagnostic criteria, clinimetrics, electrophysiology, antecedent events, antibodies, genetics, prognostic modeling, treatment effects, and long-term outcome of GBS. The IGOS will help to standardize the international collection of data and biosamples for future research of GBS.
Filiaciones:
Jacobs, BC:
Univ Med Ctr, Erasmus MC, Dept Neurol, POB 2040, NL-3000 CA Rotterdam, Netherlands
Univ Med Ctr, Erasmus MC, Dept Immunol, POB 2040, NL-3000 CA Rotterdam, Netherlands
van den Berg, B:
Univ Med Ctr, Erasmus MC, Dept Neurol, POB 2040, NL-3000 CA Rotterdam, Netherlands
Verboon, C:
Univ Med Ctr, Erasmus MC, Dept Neurol, POB 2040, NL-3000 CA Rotterdam, Netherlands
Chavada, G:
Univ Glasgow, Dept Neurol, Glasgow, Lanark, Scotland
Cornblath, DR:
Johns Hopkins Univ, Dept Neurol, Baltimore, MD 21218 USA
Gorson, KC:
Tufts Univ, Sch Med, St Elizabeths Med Ctr, Dept Neurol, Boston, MA 02111 USA
Harbo, T:
Aarhus Univ Hosp, Dept Neurol, Aarhus, Denmark
Hartung, HP:
Univ Dusseldorf, Dept Neurol, Dusseldorf, Germany
Hughes, RAC:
UCL, Inst Neurol, Dept Neurol, London, England
Kusunoki, S:
Kinki Univ, Dept Neurol, Sch Med, Osaka, Japan
van Doorn, PA:
Univ Med Ctr, Erasmus MC, Dept Neurol, POB 2040, NL-3000 CA Rotterdam, Netherlands
Willison, HJ:
Univ Glasgow, Dept Neurol, Glasgow, Lanark, Scotland
Illa I.:
Dept. of Neurology, Hospital Santa Creu I Sant Pau, Sant Antoni M. Claret 167, Barcelona, 08025, Spain
Querol L.A.:
Dept. of Neurology, Hospital Santa Creu I Sant Pau, Sant Antoni M. Claret 167, Barcelona, 08025, Spain
Green Accepted
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