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6. Contributors

Author

Adami, Fausto, primary, Antoine, Jean-Christophe, additional, Beadon, Katie, additional, Briani, Chiara, additional, Campagnolo, Marta, additional, van Doorn, Pieter A., additional, Duchesne, Mathilde, additional, Dyck, P. James B., additional, Goedee, H. Stephan, additional, Léger, Jean-Marc, additional, Lessi, Federica, additional, Luigetti, Marco, additional, Magy, Laurent, additional, Mathis, Stéphane, additional, Merkies, Ingemar S.J., additional, Notermans, Nicolette C., additional, Oaklander, Anne Louise, additional, Pruppers, Mariëlle H.J., additional, Rajabally, Yusuf A., additional, Thaisetthawatkul, Pariwat, additional, and Vallat, Jean-Michel, additional

Published
2020
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8. Red flags and adjusted suspicion index for distinguishing hereditary transthyretin amyloid polyneuropathy from idiopathic axonal polyneuropathy

Author

Opleiding Neurologie, Neurologie, Genetica Sectie Genoomdiagnostiek, Circulatory Health, Brain, Neurologen, Warendorf, Janna K, van der Star, Gerjan M, Dooijes, Dennis, Notermans, Nicolette C, Vrancken, Alexander F J E, Opleiding Neurologie, Neurologie, Genetica Sectie Genoomdiagnostiek, Circulatory Health, Brain, Neurologen, Warendorf, Janna K, van der Star, Gerjan M, Dooijes, Dennis, Notermans, Nicolette C, and Vrancken, Alexander F J E

Published
2023

10. IgM Anti MAG± Peripheral Neuropathy (IMAGiNe) Study Protocol: An international, observational, prospective registry of patients with IgM M-protein Peripheral Neuropathies

Author

Hamadeh, Tatiana, van Doormaal, Perry T C, Pruppers, Mariëlle H J, van de Mortel, Johannes P M, Hoeijmakers, Janneke G J, Cornblath, David R, Vrancken, Alexander F J E, Faber, Catharina G, Notermans, Nicolette C, Marasca, Manuele, Salvalaggio, Alessandro, Briani, Chiara, and Merkies, Ingemar S J

Subjects
anti MAG antibodies, clinimetry, paraproteinemic neuropathies, IgM neuropathies, Monoclonal gammopathy of undetermined significance
Published
2023

16. IgM anti‐MAG± peripheral neuropathy (IMAGiNe) study protocol: An international, observational, prospective registry of patients with IgM M‐protein peripheral neuropathies.

Author

Hamadeh, Tatiana, van Doormaal, Perry T. C., Pruppers, Mariëlle H. J., van de Mortel, Johannes P. M., Hoeijmakers, Janneke G. J., Cornblath, David R., Vrancken, Alexander F. J. E., Faber, Catharina G., Notermans, Nicolette C., Merkies, Ingemar S. J., Basta, Ivana, van den Bergh, Peter Y. K., Bianco, Mariangela, Briani, Chiara, Cauquil, Cécile, Carr, Aisling S., Cutellè, Claudia, D'Sa, Shirley, Dubuisson, Nicolas, and Echaniz‐Laguna, Andoni

Subjects
AUTOANTIBODIES, STATISTICS, PERIPHERAL neuropathy, IMMUNOGLOBULINS, SCIENTIFIC observation, DEMYELINATION, MONOCLONAL gammopathies, GLYCOPROTEINS, QUESTIONNAIRES, DATA analysis, LONGITUDINAL method
Abstract

Background: International consensus on IgM ± anti‐MAG ± PNP (IgM PNP) is lacking. Despite increasing interest in clinical trials, validated disease‐specific measures are needed to adequately capture limitations and changes over time. The IMAGiNe (IgM ± anti‐myelin associated glycoprotein [MAG] peripheral neuropathy) study surges as an international collaboration to create a standardized registry of patients with IgM ± anti‐MAG PNP. The consortium, which currently consists of 11 institutions from 7 countries, presents here the IMAGiNe study design and protocol. Aims: Functional outcome measures will be constructed at the level of impairment, as well as activity and participation. We aim to describe the natural history of the cohort, the role of anti‐MAG antibodies, the presence of clinical subtypes, and potential biomarkers. Methods: The IMAGiNe study is a prospective, observational cohort study with a 3‐year follow‐up. At each assessment, researchers collect clinical data and subjects complete a list of preselected outcome measures. Among these, the "Pre‐Rasch‐built Overall Disability Scale (Pre‐RODS)" questionnaire will be submitted to Rasch analysis to assess classic and modern clinimetric requirements. Results: The final measures will include the IgM‐PNP‐specific RODS and Ataxia Rating Scale (IgM‐PNP‐ARS). Descriptions of the disease course, clinical heterogeneity, treatment regimes, variations in laboratory values, and antibody titers will help reach consensus on diagnosis and follow‐up strategies. Conclusion: The constructed interval scales will be cross‐culturally valid and suitable for use in future clinical trials and daily practice. The ultimate goals are to improve functional individualized assessment, reach international consensus, and lay the foundations for successful designs in future studies. [ABSTRACT FROM AUTHOR]

Published
2023
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17. Withdrawal of intravenous immunoglobulin in chronic inflammatory demyelinating polyradiculoneuropathy

Author

Adrichem, Max E., Lucke, Ilse M., Vrancken, Alexander F.J.E., Goedee, H. Stephan, Wieske, Luuk, Dijkgraaf, Marcel G.W., Voermans, Nicol C., Notermans, Nicolette C., Faber, Catharina G., Visser, Leo H., Kuitwaard, Krista, van Doorn, Pieter A., Merkies, Ingemar S.J., de Haan, Rob J., van Schaik, Ivo N., Eftimov, Filip, Adrichem, Max E., Lucke, Ilse M., Vrancken, Alexander F.J.E., Goedee, H. Stephan, Wieske, Luuk, Dijkgraaf, Marcel G.W., Voermans, Nicol C., Notermans, Nicolette C., Faber, Catharina G., Visser, Leo H., Kuitwaard, Krista, van Doorn, Pieter A., Merkies, Ingemar S.J., de Haan, Rob J., van Schaik, Ivo N., and Eftimov, Filip

Abstract

Intravenous immunoglobulins are an efficacious treatment for chronic inflammatory demyelinating polyradiculoneuropathy. Biomarkers for disease activity are lacking, making the need for ongoing treatment difficult to assess, leading to potential overtreatment and high health-care costs. Our objective was to determine whether intravenous immunoglobulin withdrawal is non-inferior to continuing intravenous immunoglobulin treatment and to determine how often patients are overtreated. We performed a randomized, double-blind, intravenous immunoglobulin-controlled non-inferiority trial in seven centres in the Netherlands (Trial registration: ISRCTN 13637698; www.isrctn.com/ISRCTN13637698). Adults with clinically stable chronic inflammatory demyelinating polyradiculoneuropathy using intravenous immunoglobulin maintenance treatment for at least 6 months were included. Patients received either intravenous immunoglobulin withdrawal (placebo) as investigational treatment or continuation of intravenous immunoglobulin treatment (control). The primary outcome was the mean change in logit scores from baseline to 24-week follow-up on the patient-reported Inflammatory Rasch-Overall Disability Scale. The non-inferiority margin was predefined as between-group difference in mean change scores of -0.65. Patients who deteriorated could reach a relapse end point according to predefined criteria. Patients with a relapse end point after intravenous immunoglobulin withdrawal entered a restabilization phase. All patients from the withdrawal group who remained stable were included in an open-label extension phase of 52 weeks. We included 60 patients, of whom 29 were randomized to intravenous immunoglobulin withdrawal and 31 to continuation of treatment. The mean age was 58 years (SD 14.7) and 67% was male. The between-group difference in mean change Inflammatory Rasch-Overall Disability Scale scores was -0.47 (95% CI -1.24 to 0.31), indicating that non-inferiority of intravenous immunoglobuli

Published
2022

18. Vegetarians, Pescatarians and Flexitarians with Adequate Vitamin B12 Levels Have No Increased Risk of Polyneuropathy

Author

Van Doormaal, Perry T.C., Warendorf, Janna K., Visser, Nora A., De Vries, Jeanne H.M., Notermans, Nicolette C., Vrancken, Alexander F.J.E., Van Doormaal, Perry T.C., Warendorf, Janna K., Visser, Nora A., De Vries, Jeanne H.M., Notermans, Nicolette C., and Vrancken, Alexander F.J.E.

Abstract

Background: In recent years, an increasing number of people adapt to a vegetarian, pescatarian or flexitarian dietary pattern that reduces the consumption of meat and fish. Although these dietary patterns have a risk for developing vitamin B12 deficiency associated polyneuropathy, it is unknown whether this risk is still increased when vitamin B12 levels are adequate. Objective: To examine whether a vegetarian, pescatarian or flexitarian dietary pattern is associated with an increased risk for idiopathic axonal polyneuropathy. Methods: We conducted a case-control study that included 256 idiopathic axonal polyneuropathy patients with adequate vitamin B12 blood levels and 630 controls. We used questionnaire data to determine the frequency of meat and fish consumption and defined dietary patterns. Results: The vegetarian (no meat or fish consumption) and the pescatarian (fish consumption, no meat consumption) dietary patterns showed no increased risk of axonal polyneuropathy. Frequency-effect analysis and quantity-effect analysis also did not show that a reduction of meat or fish consumption (flexitarian dietary pattern), either small or large, changed the risk of axonal polyneuropathy. Conclusions: We did not find an increased risk for axonal polyneuropathy among people with a vegetarian, pescatarian or flexitarian diet and an adequate vitamin B12 level.

Published
2022

19. Enriched enrollment randomized double-blind placebo-controlled cross-over trial with phenytoin cream in painful chronic idiopathic axonal polyneuropathy (EPHENE): a study protocol

Author

Onderzoek NEU, Data Science & Biostatistiek, Projectafdeling ALS, Brain, Opleiding Neurologie, Neurologie, Neurologen, Kopsky, David J., van Eijk, Ruben P.A., Warendorf, Janna K., Keppel Hesselink, Jan M., Notermans, Nicolette C., Vrancken, Alexander F.J.E., Onderzoek NEU, Data Science & Biostatistiek, Projectafdeling ALS, Brain, Opleiding Neurologie, Neurologie, Neurologen, Kopsky, David J., van Eijk, Ruben P.A., Warendorf, Janna K., Keppel Hesselink, Jan M., Notermans, Nicolette C., and Vrancken, Alexander F.J.E.

Published
2022

20. Polyneuropathy Associated with IgM Monoclonal Gammopathy; Advances in Genetics and Treatment, Focusing on Anti-MAG Antibodies

Author

Neurologen, Brain, ZL Neuromusculaire Ziekten Medisch, Onderzoeksgroep Minnema, MS Hematologie, Cancer, Infection & Immunity, Regenerative Medicine and Stem Cells, Neurologie, van de Mortel, Max, D'Sa, Shirley, Vrancken, Alexander, Notermans, Nicolette C, Vos, Josephine, Minnema, M, Neurologen, Brain, ZL Neuromusculaire Ziekten Medisch, Onderzoeksgroep Minnema, MS Hematologie, Cancer, Infection & Immunity, Regenerative Medicine and Stem Cells, Neurologie, van de Mortel, Max, D'Sa, Shirley, Vrancken, Alexander, Notermans, Nicolette C, Vos, Josephine, and Minnema, M

Published
2022

21. Clinical relevance of testing for metabolic vitamin B12 deficiency in patients with polyneuropathy

Author

Opleiding Neurologie, Neurologen, Brain, Genetica Sectie Metabole Diagnostiek, Child Health, Cancer, Projectafdeling ALS, Regenerative Medicine and Stem Cells, Neurologie, Warendorf, Janna K, van Doormaal, Perry T C, Vrancken, Alexander F J E, Verhoeven-Duif, Nanda M, van Eijk, Ruben P A, van den Berg, Leonard H, Notermans, Nicolette C, Opleiding Neurologie, Neurologen, Brain, Genetica Sectie Metabole Diagnostiek, Child Health, Cancer, Projectafdeling ALS, Regenerative Medicine and Stem Cells, Neurologie, Warendorf, Janna K, van Doormaal, Perry T C, Vrancken, Alexander F J E, Verhoeven-Duif, Nanda M, van Eijk, Ruben P A, van den Berg, Leonard H, and Notermans, Nicolette C

Published
2022

22. Serum neurofilament light chain, contactin-1 and complement activation in anti-MAG IgM paraprotein-related peripheral neuropathy

Author

Infection & Immunity, MS Hematologie, Regenerative Medicine and Stem Cells, Cancer, Neurologie, Brain, Amaador, Karima, Wieske, Luuk, Koel-Simmelink, Marleen J A, Kamp, A, Jongerius, Ilse, de Heer, Koen, Teunissen, Charlotte E, Minnema, Monique C, Notermans, Nicolette C, Eftimov, Filip, Kersten, Marie José, Vos, Josephine M I, Infection & Immunity, MS Hematologie, Regenerative Medicine and Stem Cells, Cancer, Neurologie, Brain, Amaador, Karima, Wieske, Luuk, Koel-Simmelink, Marleen J A, Kamp, A, Jongerius, Ilse, de Heer, Koen, Teunissen, Charlotte E, Minnema, Monique C, Notermans, Nicolette C, Eftimov, Filip, Kersten, Marie José, and Vos, Josephine M I

Published
2022

26. Withdrawal of intravenous immunoglobulin in chronic inflammatory demyelinating polyradiculoneuropathy

Author

Adrichem, Max E., primary, Lucke, Ilse M., additional, Vrancken, Alexander F. J. E., additional, Goedee, H. Stephan, additional, Wieske, Luuk, additional, Dijkgraaf, Marcel G. W., additional, Voermans, Nicol C., additional, Notermans, Nicolette C., additional, Faber, Catharina G., additional, Visser, Leo H., additional, Kuitwaard, Krista, additional, van Doorn, Pieter A., additional, Merkies, Ingemar S. J., additional, de Haan, Rob J., additional, van Schaik, Ivo N., additional, and Eftimov, Filip, additional

Published
2022
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27. Serum Neurofilament Light Chain and Contactin-1 Levels Are Not Potential Serum Biomarkers in Anti-MAG IgM Paraprotein Related Peripheral Neuropathy

Author

Amaador, Karima, primary, Wieske, Luuk, additional, Koel-Simmelink, Marleen J.A., additional, Teunissen, Charlotte E., additional, de Heer, Keon, additional, Minnema, Monique C., additional, Notermans, Nicolette C., additional, Eftimov, Filip, additional, Kersten, Marie José, additional, and Vos, Josephine M.I., additional

Published
2021
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29. Clinical relevance of testing for metabolic vitamin B12 deficiency in patients with polyneuropathy.

Author

Warendorf, Janna K., van Doormaal, Perry T.C., Vrancken, Alexander F.J.E., Verhoeven-Duif, Nanda M., van Eijk, Ruben P.A., van den Berg, Leonard H., and Notermans, Nicolette C.

Subjects
VITAMIN B12 deficiency, DIABETIC neuropathies, POLYNEUROPATHIES, DIETARY supplements, METHYLMALONIC acid, POLYHYDRAMNIOS, VITAMIN B12
Abstract

Determine vitamin B12 threshold levels below which additional testing of methylmalonic acid (MMA) and/or homocysteine (Hcy) is useful to diagnose metabolic vitamin B12 deficiency in patients with polyneuropathy, and how vitamin B12, MMA and Hcy levels relate to the effect of supplementation therapy. In a retrospective cohort study of 331 patients with polyneuropathy, vitamin B12, MMA and Hcy were measured. Linear regression models with vitamin B12 as dependent and Hcy or MMA as covariate were compared, to assess which was best related to vitamin B12. Threshold vitamin B12 levels for metabolic deficiency (defined as elevatede metabolites) were determined using logistic regression with elevated metabolites as dependent and vitamin B12 as covariate. A structured interview was conducted in 42 patients to evaluate response to vitamin B12 supplementation. MMA was best related to vitamin B12. Using elevated MMA for metabolic deficiency, we found 90% sensitivity at a vitamin B12 threshold level <264 pmol/L (358 pg/mL) and 95% sensitivity at <304 pmol/L (412 pg/mL). Improvement after supplementation was reported by 19% patients and stabilization by 24%. 88% of patients with improvement and 90% with stabilization either had absolute deficiency (Vitamin B12 < 148 pmol/L) or metabolic deficiency (elevated MMA and vitamin B12 ≥ 148 pmol/L). There were no additional patients with improvement or stabilization with isolated elevated Hcy. Testing of MMA has additional value in identifying patients with clinically relevant metabolic deficiency when vitamin B12 is below 304 pmol/L (412 pg/mL). Supplementation can be effective in patients with absolute and metabolic deficiency. [ABSTRACT FROM AUTHOR]

Published
2022
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32. Comparing the NIS vs. MRC and INCAT sensory scale through Rasch analyses

Author

Draak, Thomas H. P., Vanhoutte, Els K., van Nes, Sonja I., Gorson, Kenneth C., Van der Pol, W.-Ludo, Notermans, Nicolette C., Nobile-Orazio, Eduardo, Lewis, Richard A., Léger, Jean-Marc, Van den Bergh, Peter Y. K., Lauria, Giuseppe, Bril, Vera, Katzberg, Hans, Lunn, Michael P. T., Pouget, Jean, van der Kooi, Anneke J., Hahn, Angelika F., van den Berg, Leonard H., van Doorn, Pieter A., Cornblath, David R., Faber, Catharina G., Merkies, Ingemar S. J., Barreira, A. A., Bennett, D., Hadden, R. D., Hughes, R. A.C., Lunn, M. P.T., Reilly, M. M., van den Berg, L. H., van Doorn, P. A., Faber, C. G., van der Kooi, A. J., Merkies, I. S.J., Notermans, N. C., Raaphorts, J., van Schaik, I. N., de Visser, M., Cats, E. A., Van den Bergh, P. Y.K., Bombelli, F., Costa, R., Franques, J., Léger, J-M., Pouget, J., Bril, V., Hahn, A. F., Katzberg, H., Campanella, A., Devigili, G., Gallia, F., Lauria, G., Nobile-Orazio, E., Padua, L., Cornblath, D. R., Gorson, K. C., Lewis, R. A., Illa, I, Querol, L., and van Nes, S. I.

Published
2015
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33. Grip strength comparison in immune-mediated neuropathies: Vigorimeter vs. Jamar

Author

Draak, Thomas H. P., Pruppers, Mariëlle H. J., van Nes, Sonja I., Vanhoutte, Els K., Bakkers, Mayienne, Gorson, Kenneth C., Van der Pol, W.-Ludo, Lewis, Richard. A., Notermans, Nicolette C., Nobile-Orazio, Eduardo, Léger, Jean-Marc, Van den Bergh, Peter Y. K., Lauria, Giuseppe, Bril, Vera, Katzberg, Hans, Lunn, Michael P. T., Pouget, Jean, van der Kooi, Anneke J., van den Berg, Leonard H., van Doorn, Pieter A., Cornblath, David R., Hahn, Angelika F., Faber, Catharina G., Merkies, Ingemar S. J., Barreira, A. A., Bennett, D., Hadden, R. D., Hughes, R. A.C., Lunn, M. P.T., Reilly, M. M., van den Berg, L. H., van Doorn, P. A., Faber, C. G., van der Kooi, A. J., Merkies, I. S.J., Notermans, N. C., Raaphorts, J., van Schaik, I. N., de Visser, M., Cats, E. A., Van den Bergh, P. Y.K., Bombelli, F., Costa, R., Franques, J., Léger, J-M., Pouget, J., Bril, V., Hahn, A. F., Katzberg, H., Campanella, A., Devigili, G., Gallia, F., Lauria, G., Nobile-Orazio, E., Padua, L., Cornblath, D. R., Gorson, K. C., Lewis, R. A., Illa, I, Querol, L., and van Nes, S. I.

Published
2015
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34. Impairment measures versus inflammatory RODS in GBS and CIDP: a responsiveness comparison

Author

Vanhoutte, Els K., Draak, Thomas H. P., Gorson, Kenneth C., van Nes, Sonja I., Hoeijmakers, Janneke G. J., Van der Pol, W.-Ludo, Notermans, Nicolette. C., Lewis, Richard A., Nobile-Orazio, Eduardo, Léger, Jean-Marc, Van den Bergh, Peter Y. K., Lauria, Giuseppe, Bril, Vera, Katzberg, Hans, Lunn, Michael P. T., Pouget, Jean, van der Kooi, Anneke J., Hahn, Angelika F., van Doorn, Pieter A., Cornblath, David R., van den Berg, Leonard H., Faber, Catharina G., Merkies, Ingemar S. J., Barreira, A. A., Bennett, D., Hadden, R. D., Hughes, R. A.C., Lunn, M. P.T., Reilly, M. M., van den Berg, L. H., van Doorn, P. A., Faber, C. G., van der Kooi, A. J., Merkies, I. S.J., Notermans, N. C., Raaphorts, J., van Schaik, I. N., de Visser, M., Cats, E. A., Van den Bergh, P. Y.K., Bombelli, F., Costa, R., Franques, J., Léger, J-M., Pouget, J., Bril, V., Hahn, A. F., Katzberg, H., Campanella, A., Devigili, G., Gallia, F., Lauria, G., Nobile-Orazio, E., Padua, L., Cornblath, D. R., Gorson, K. C., Lewis, R. A., Illa, I, Querol, L., and van Nes, S. I.

Published
2015
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42. Usefulness of a Double-Blind Placebo-Controlled Response Test to Demonstrate Rapid Onset Analgesia with Phenytoin 10% Cream in Polyneuropathy

Author

Kopsky, David J, Vrancken, Alexander F J E, Keppel Hesselink, Jan M, van Eijk, Ruben P A, and Notermans, Nicolette C

Subjects
neuropathic pain, treatment, digestive, oral, and skin physiology, analgesics, neuropathy, topical administration, Journal of Pain Research, Original Research
Abstract

David J Kopsky,1 Alexander FJE Vrancken,2 Jan M Keppel Hesselink,3 Ruben PA van Eijk,2,4 Nicolette C Notermans2 1Institute for Neuropathic Pain, Amsterdam, the Netherlands; 2Department of Neurology, Brain Centre University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands; 3Institute for Neuropathic Pain, Bosch En Duin, the Netherlands; 4Biostatistics & Research Support, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the NetherlandsCorrespondence: David J Kopsky Tel +31 6 28671847Email info@neuropathie.nuPurpose: Topical analgesics are an upcoming treatment option for neuropathic pain. In this observational study, we performed a double-blind placebo-controlled response test (DOBRET) in patients with polyneuropathy to determine the personalized analgesic effect of phenytoin 10% cream.Patients and Methods: In a double-blind fashion, 12 consecutive adult patients with symmetrical painful polyneuropathy and equal pain intensity of ≥ 4 on the 11-point numerical rating scale (NRS) applied phenytoin10% cream on one painful area and a placebo cream on the corresponding contralateral area. We defined responders as patients who experienced a pain reduction ≥ 2 NRS points from baseline and ≥ 1 NRS point difference in pain reduction in favour of phenytoin 10% cream compared with placebo cream within 30 minutes after application. We also evaluated the percentage of pain reduction and frequency of 30% and 50% pain relief from baseline.Results: Six patients (50%) were responders. Compared with placebo cream, pain reduction was higher in phenytoin 10% cream-applied areas with mean difference in pain reductionof 1.3 (95% CI: 1.1 to 1.8; p< 0.001) on the NRS and mean percentage difference in pain reduction of 22% (95% CI: 13% to 32%; p =0.03). All responders had at least 30% pain reduction, and 4 out of 6 had at least 50% pain reduction in the phenytoin 10% cream applied area. All non-responders had less than 30% pain reduction. No side effects were reported.Conclusion: A DOBRET is easy to perform, quickly identifies an analgesic effect in responders and could be a useful tool to personalize neuropathic pain treatment with topical formulations.Keywords: neuropathic pain, treatment, topical administration, analgesics, neuropathy

Published
2020

43. Usefulness of a Double-Blind Placebo-Controlled Response Test to Demonstrate Rapid Onset Analgesia with Phenytoin 10% Cream in Polyneuropathy

Author

Kopsky,David J, Vrancken,Alexander FJE, Keppel Hesselink,Jan M, van Eijk,Ruben PA, Notermans,Nicolette C, Kopsky,David J, Vrancken,Alexander FJE, Keppel Hesselink,Jan M, van Eijk,Ruben PA, and Notermans,Nicolette C

Abstract

David J Kopsky,1 Alexander FJE Vrancken,2 Jan M Keppel Hesselink,3 Ruben PA van Eijk,2,4 Nicolette C Notermans2 1Institute for Neuropathic Pain, Amsterdam, the Netherlands; 2Department of Neurology, Brain Centre University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands; 3Institute for Neuropathic Pain, Bosch En Duin, the Netherlands; 4Biostatistics & Research Support, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, the NetherlandsCorrespondence: David J Kopsky Tel +31 6 28671847Email info@neuropathie.nuPurpose: Topical analgesics are an upcoming treatment option for neuropathic pain. In this observational study, we performed a double-blind placebo-controlled response test (DOBRET) in patients with polyneuropathy to determine the personalized analgesic effect of phenytoin 10% cream.Patients and Methods: In a double-blind fashion, 12 consecutive adult patients with symmetrical painful polyneuropathy and equal pain intensity of ≥ 4 on the 11-point numerical rating scale (NRS) applied phenytoin10% cream on one painful area and a placebo cream on the corresponding contralateral area. We defined responders as patients who experienced a pain reduction ≥ 2 NRS points from baseline and ≥ 1 NRS point difference in pain reduction in favour of phenytoin 10% cream compared with placebo cream within 30 minutes after application. We also evaluated the percentage of pain reduction and frequency of 30% and 50% pain relief from baseline.Results: Six patients (50%) were responders. Compared with placebo cream, pain reduction was higher in phenytoin 10% cream-applied areas with mean difference in pain reduction of 1.3 (95% CI: 1.1 to 1.8; p< 0.001) on the NRS and mean percentage difference in pain reduction of 22% (95% CI: 13% to 32%; p =0.03). All responders had at least 30% pain reduction, and 4 out of 6 had at least 50% pain reduction in the phenytoin 10% cream applied

Published
2020

44. Usefulness of a Double-Blind Placebo-Controlled Response Test to Demonstrate Rapid Onset Analgesia with Phenytoin 10% Cream in Polyneuropathy

Author

Onderzoek NEU, ZL Neuromusculaire Ziekten Medisch, Neurologen, Brain, Projectafdeling ALS, Neurologie, Kopsky, David J, Vrancken, Alexander F J E, Keppel Hesselink, Jan M, van Eijk, Ruben P A, Notermans, Nicolette C, Onderzoek NEU, ZL Neuromusculaire Ziekten Medisch, Neurologen, Brain, Projectafdeling ALS, Neurologie, Kopsky, David J, Vrancken, Alexander F J E, Keppel Hesselink, Jan M, van Eijk, Ruben P A, and Notermans, Nicolette C

Published
2020

45. Performance and Self-reported Functioning of People With Chronic Idiopathic Axonal Polyneuropathy: A 4-Year Follow-up Study

Author

RF&S Team 1 Medisch, Neurologie, Brain, van Oeijen, Karlijn, Teunissen, Laurien L., van Leeuwen, Christel, van Opstal, Marleen, José van der Putten, Marie, Notermans, Nicolette C., van Meeteren, Nico L.U., Schröder, Carin D., RF&S Team 1 Medisch, Neurologie, Brain, van Oeijen, Karlijn, Teunissen, Laurien L., van Leeuwen, Christel, van Opstal, Marleen, José van der Putten, Marie, Notermans, Nicolette C., van Meeteren, Nico L.U., and Schröder, Carin D.

Published
2020

46. A hereditary spastic paraplegia predominant phenotype caused by variants in the NEFL gene

Author

Genetica, Genetica Sectie Genoomdiagnostiek, Circulatory Health, Genetica Klinische Genetica, Neurologie, Brain, Mul, Karlien, Schouten, Meyke I, van der Looij, Erica, Dooijes, Dennis, Hennekam, Frederic A M, Notermans, Nicolette C, Praamstra, Peter, van Gaalen, Judith, Kamsteeg, Erik-Jan, Verbeek, Nienke E, van de Warrenburg, Bart P C, Genetica, Genetica Sectie Genoomdiagnostiek, Circulatory Health, Genetica Klinische Genetica, Neurologie, Brain, Mul, Karlien, Schouten, Meyke I, van der Looij, Erica, Dooijes, Dennis, Hennekam, Frederic A M, Notermans, Nicolette C, Praamstra, Peter, van Gaalen, Judith, Kamsteeg, Erik-Jan, Verbeek, Nienke E, and van de Warrenburg, Bart P C

Published
2020

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