Description of the data requested in the study forms
Data type | Requested fields |
For all included patients (mandatory form) | Demographic data, verification of exclusion and inclusion criteria, SNN score, final retained diagnosis (SNN, CIDP, SFN, LDN or other), autoimmune context (SS, SLE, IBD or inflammatory rheumatism) |
For anti-FGFR3-positive patients and ‘center-matched’ negative patients (detailed form) | |
Clinical data at onset | Date, course of neuropathy, sensory symptoms, topography of symptoms (UL, LL, proximal or distal) |
Clinical data at the first clinical exam and at the last clinical exam | Date, symptoms as reported by the patient, distribution of sensory manifestations as reported by the patient and as observed on clinical examination (UL, LL, proximal or distal), presence of dysautonomia and/or ataxia, tendon reflexes, M-Rankin score and other clinical scores |
ENMG | Date, copy of the reports, normal values of the ENMG laboratory |
Paraclinical data | Associated diseases: diabetes, cancers, IBD, celiac disease, autoimmune hepatitis, inflammatory rheumatic disease, SLE, SS, Sharp syndrome, sclerodermia, sarcoidosis, other diseases Laboratory investigations: blood biochemical analyses (glucose, CRP, HbA1c, creatinine, liver enzymes, TSH, protein electrophoresis), immunology (complement, research of autoantibodies: onconeuronal, antineuronal, anti-ganglioside, ANA, anti-dsDNA, anti-SSA/SSB, ANCA, anti-citrulline, anti-mitochondrial, anti-tissue transglutaminase, rheumatoid factor, cryoglobulins) and haematology (CBC), cerebrospinal fluid analyses (total protein, glucose), biopsies (nerve, skin or other) Imaging examination: PETscan, MRI or other |
Immunomodulatory treatment | Type, date of onset and end, posology, treatment efficiency (stabilisation, failure, improvement, not clear) |
ANA, antinuclear antibody; ANCA, antineutrophil cytoplasmic antibodies; anti-dsDNA, anti-double stranded DNA antibodies; CBC, complete blood count; CIDP, chronic inflammatory demyelinating polyneuropathy; CRP, C reactive protein; ENMG, electroneuromyography;FGFR3, fibroblast growth factor receptor 3; HbA1c, glycosylated haemoglobin A1c; IBD, inflammatory bowel disease; LDN, length-dependent neuropathy; LL, lower limbs; M-Rankin, modified-Rankin; PETscan, positron emission tomography; SFN, small fibre neuropathy; SLE, systemic lupus erythematous; SNN, sensory neuronopathy; SS, Sjögren syndrome; SSA, Sjögren syndrome A;SSB, Sjögren syndrome B; TSH, thyroid-stimulating hormone; UL, upper limbs.