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Your search keyword '"Van Eijk, Ruben P.A."' showing total 32 results
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32 results on '"Van Eijk, Ruben P.A."'

6. Monitoring Nusinersen Treatment Effects in Children with Spinal Muscular Atrophy with Quantitative Muscle MRI

Author

Projectafdeling ALS, Precision Imaging Group, Brain, Cancer, Circulatory Health, Highfield Research Group, Datamanagement Team 1, Neurologen, Kinderbewegingszorg patientenzorg, Verpleegkundig Specialisten, Divisie Beeld & Oncologie, Otto, Louise A.M., Froeling, M., Van Eijk, Ruben P.A., Wadman, Renske I., Cuppen, Inge, Van Der Woude, Danny R., Bartels, Bart, Asselman, Fay Lynn, Hendrikse, Jeroen, Van Der Pol, W. Ludo, Projectafdeling ALS, Precision Imaging Group, Brain, Cancer, Circulatory Health, Highfield Research Group, Datamanagement Team 1, Neurologen, Kinderbewegingszorg patientenzorg, Verpleegkundig Specialisten, Divisie Beeld & Oncologie, Otto, Louise A.M., Froeling, M., Van Eijk, Ruben P.A., Wadman, Renske I., Cuppen, Inge, Van Der Woude, Danny R., Bartels, Bart, Asselman, Fay Lynn, Hendrikse, Jeroen, and Van Der Pol, W. Ludo

Published
2024

7. The Effects of a Blended Care Intervention in Partners of Patients With Acquired Brain Injury - Results of the CARE4Carer Randomized Controlled Trial

Author

Revalidatiegeneeskunde Onderwijs, RF&S Team 1 Medisch, Datamanagement Team 2, Projectafdeling ALS, Brain, RF&S Revalidatie, Fysiotherapie & Sport, Revalidatie Medisch Volwassenen, Circulatory Health, Welten, Jennifer J.E., Cox, Vincent C.M., van Eijk, Ruben P.A., van Heugten, Caroline M., Visser-Meily, Johanna M.A., Schepers, Vera P.M., Revalidatiegeneeskunde Onderwijs, RF&S Team 1 Medisch, Datamanagement Team 2, Projectafdeling ALS, Brain, RF&S Revalidatie, Fysiotherapie & Sport, Revalidatie Medisch Volwassenen, Circulatory Health, Welten, Jennifer J.E., Cox, Vincent C.M., van Eijk, Ruben P.A., van Heugten, Caroline M., Visser-Meily, Johanna M.A., and Schepers, Vera P.M.

Published
2024

8. The ALSFRS-R Summit: a global call to action on the use of the ALSFRS-R in ALS clinical trials.

Author

Genge, Angela, Cedarbaum, Jesse M., Shefner, Jeremy, Chio, Adriano, Al-Chalabi, Ammar, Van Damme, Philip, McDermott, Chris, Glass, Jonathan, Berry, James, van Eijk, Ruben P.A., Fournier, Christina, Grosskreutz, Julian, Andrews, Jinsy, Bertone, Vanessa, Bunte, Tommy M, Couillard, Mathias, Cummings, Cathy, Kittle, Gale, Polzer, John, and Salmon, Kristiana

Subjects
CLINICAL trials, AMYOTROPHIC lateral sclerosis, EXPERIMENTAL design
Abstract

The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) was developed more than 25 years ago as an instrument to monitor functional change over time in patients with ALS. It has since been revised and extended to meet the needs of high data quality in ALS trials (ALSFRS-R), however a full re-validation of the scale was not completed. Despite this, the scale has remained a primary outcome measure in clinical trials. We convened a group of clinical trialists to discuss and explore opportunities to improve the scale and propose alternative measures. In this meeting report, we present a call to action on the use of the ALSFRS-Revised scale in clinical trials, focusing on the need for (1) harmonization of the ALSFRS-R administration globally, (2) alignment on a set of recommendations for clinical trial design and statistical analysis plans (SAPs), and (3) use of additional outcome measures. [ABSTRACT FROM AUTHOR]

Published
2024
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10. Assessment of risk of ALS conferred by the GGGGCC hexanucleotide repeat expansion in C9orf72 among first-degree relatives of patients with ALS carrying the repeat expansion.

Author

Van Wijk, Iris F., Van Eijk, Ruben P.A., Van Boxmeer, Loes, Westeneng, Henk-Jan, Van Es, Michael A., Van Rheenen, Wouter, Van Den Berg, Leonard H., Eijkemans, Marinus J.C., and Veldink, Jan H.

Subjects
*RISK assessment, *RANDOM effects model, *RELATIVES
Abstract

We aimed to estimate the age-related risk of ALS in first-degree relatives of patients with ALS carrying the C9orf72 repeat expansion. We included all patients with ALS carrying a C9orf72 repeat expansion in The Netherlands. Using structured questionnaires, we determined the number of first-degree relatives, their age at death due to ALS or another cause, or age at time of questionnaire. The cumulative incidence of ALS among first-degree relatives was estimated, while accounting for death from other causes. Variability in ALS risk between families was evaluated using a random effects hazards model. We used a second, distinct approach to estimate the risk of ALS and FTD in the general population, using previously published data. In total, 214 of the 2,486 (9.2%) patients with ALS carried the C9orf72 repeat expansion. The mean risk of ALS at age 80 for first-degree relatives carrying the repeat expansion was 24.1%, but ranged between individual families from 16.0 to 60.6%. Using the second approach, we found the risk of ALS and FTD combined was 28.7% (95% CI 17.8%–54.3%) for carriers in the general population. On average, our estimated risk of ALS in the C9orf72 repeat expansion was lower compared to historical estimates. We showed, however, that the risk of ALS likely varies between families and one overall penetrance estimate may not be sufficient to describe ALS risk. This warrants a tailor-made, patient-specific approach in testing. Further studies are needed to assess the risk of FTD in the C9orf72 repeat expansion. [ABSTRACT FROM AUTHOR]

Published
2024
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12. Development of a Rasch-Built Amyotrophic Lateral Sclerosis Impairment Multidomain Scale to Measure Disease Progression in ALS

Author

de Jongh, Adriaan D., primary, van Eijk, Ruben P.A., additional, Bakker, Leonhard A., additional, Bunte, Tommy M., additional, Beelen, Anita, additional, van der Meijden, Conny, additional, van Es, Michael A., additional, Visser-Meily, Johanna M.A., additional, Kruitwagen, Esther T., additional, Veldink, Jan H., additional, and van den Berg, Leonard H., additional

Published
2023
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14. Portable fixed dynamometry enables home-based, reliable assessment of muscle strength in patients with amyotrophic lateral sclerosis: a pilot study.

Author

Van Unnik, Jordi W. J., Bakers, Jaap N.E., Kokx, Steure, Van Den Berg, Leonard H., Visser-Meily, Johanna M.A., Beelen, Anita, and Van Eijk, Ruben P.A.

Subjects
AMYOTROPHIC lateral sclerosis, MUSCLE strength, MEASUREMENT errors, STATISTICAL reliability, PILOT projects
Abstract

To determine the feasibility, reliability, and sensitivity of remotely monitoring muscle strength loss of knee extensors using a novel portable fixed dynamometer (PFD) in patients with amyotrophic lateral sclerosis (ALS). We conducted a pilot study with a newly developed device to measure knee extension strength. Patients performed unsupervised PFD measurements, biweekly, for 6 months at home. We evaluated feasibility using adherence and a device-specific questionnaire. Reliability was assessed by (1) comparing unsupervised and supervised measurements to identify systematic bias, and (2) comparing consecutive unsupervised measurements to determine test-retest reliability expressed as intraclass correlation coefficient (ICC) and standard error of measurement (SEM). Sensitivity to detect longitudinal change was described using linear mixed-effects models. We enrolled 18 patients with ALS. Adherence was 86%, where all patients found that the device suitable to measure muscle strength at home; 4 patients (24%) found the measurements burdensome. The correlation between (un)supervised measurements was excellent (Pearson's r 0.97, 95%CI; 0.94 − 0.99) and no systematic bias was present (mean difference 0.13, 95%CI; −2.22 − 2.48, p = 0.91). Unsupervised measurements had excellent test-retest reliability with an average ICC of 0.97 (95%CI: 0.94 − 0.99) and SEM of 5.8% (95%CI: 4.8 − 7.0). Muscle strength declined monthly by 1.9 %predicted points (95%CI; −3.0 to −0.9, p = 0.001). Using the PFD, it proved feasible to perform knee extension strength measurements at home which were reliable and sensitive for detecting muscle strength loss. Larger studies are warranted to compare the device with conventional outcomes. [ABSTRACT FROM AUTHOR]

Published
2023
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15. Development and Evaluation of a Simulation-Based Algorithm to Optimize the Planning of Interim Analyses for Clinical Trials in ALS

Author

van Unnik, Jordi W.J., primary, Nikolakopoulos, Stavros, additional, Eijkemans, Marinus J.C, additional, Gonzalez-Bermejo, Jésus, additional, Bruneteau, Gaelle, additional, Morelot-Panzini, Capucine, additional, van den Berg, Leonard H., additional, Cudkowicz, Merit E., additional, McDermott, Christopher J., additional, Similowski, Thomas, additional, and van Eijk, Ruben P.A., additional

Published
2023
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17. Continuous Theta-Burst Stimulation of the Contralesional Primary Motor Cortex for Promotion of Upper Limb Recovery After Stroke: A Randomized Controlled Trial

Author

In Vivo NMR ISI, Brain, Projectafdeling KIND, Datamanagement Team 1, Projectafdeling ALS, Cancer, Neurologen, Circulatory Health, Stroke, RF&S Revalidatie, Fysiotherapie & Sport, Revalidatie Medisch Volwassenen, Vink, Jord J.T., van Lieshout, Eline C.C., Otte, Willem M., van Eijk, Ruben P.A., Kouwenhoven, Mirjam, Neggers, Sebastiaan F.W., van der Worp, H. Bart, Visser-Meily, Johanna M.A., Dijkhuizen, Rick M., In Vivo NMR ISI, Brain, Projectafdeling KIND, Datamanagement Team 1, Projectafdeling ALS, Cancer, Neurologen, Circulatory Health, Stroke, RF&S Revalidatie, Fysiotherapie & Sport, Revalidatie Medisch Volwassenen, Vink, Jord J.T., van Lieshout, Eline C.C., Otte, Willem M., van Eijk, Ruben P.A., Kouwenhoven, Mirjam, Neggers, Sebastiaan F.W., van der Worp, H. Bart, Visser-Meily, Johanna M.A., and Dijkhuizen, Rick M.

Published
2023

18. Association Between Serum Lipids and Survival in Patients With Amyotrophic Lateral Sclerosis: A Meta-analysis and Population-Based Study

Author

Opleiding Neurologie, Neurologen, Brain, Neuromuscular Disorders, Genetic Risks, Projectafdeling ALS, Regenerative Medicine and Stem Cells, Datamanagement Team 1, Janse Van Mantgem, Mark R., Van Rheenen, Wouter, Hackeng, Anemone V., Van Es, Michael A., Veldink, Jan H., Van Den Berg, Leonard H., Van Eijk, Ruben P.A., Opleiding Neurologie, Neurologen, Brain, Neuromuscular Disorders, Genetic Risks, Projectafdeling ALS, Regenerative Medicine and Stem Cells, Datamanagement Team 1, Janse Van Mantgem, Mark R., Van Rheenen, Wouter, Hackeng, Anemone V., Van Es, Michael A., Veldink, Jan H., Van Den Berg, Leonard H., and Van Eijk, Ruben P.A.

Published
2023

19. Longitudinal prospective cohort study to assess peripheral motor function with extensive electrophysiological techniques in patients with Spinal Muscular Atrophy (SMA): the SMA Motor Map protocol

Author

Projectafdeling SvS, Neurologen, Onderzoek NEU, Verpleegkundig Specialisten, Kinderbewegingszorg patientenzorg, Datamanagement Team 1, Projectafdeling ALS, Brain, Ros, Leandra A.A., Goedee, H. Stephan, Franssen, Hessel, Asselman, Fay Lynn, Bartels, Bart, Cuppen, Inge, van Eijk, Ruben P.A., Sleutjes, Boudewijn T.H.M., van der Pol, W. Ludo, Wadman, Renske I., Projectafdeling SvS, Neurologen, Onderzoek NEU, Verpleegkundig Specialisten, Kinderbewegingszorg patientenzorg, Datamanagement Team 1, Projectafdeling ALS, Brain, Ros, Leandra A.A., Goedee, H. Stephan, Franssen, Hessel, Asselman, Fay Lynn, Bartels, Bart, Cuppen, Inge, van Eijk, Ruben P.A., Sleutjes, Boudewijn T.H.M., van der Pol, W. Ludo, and Wadman, Renske I.

Published
2023

20. The RESISTANT study (Respiratory Muscle Training in Patients with Spinal Muscular Atrophy): study protocol for a randomized controlled trial

Author

Activity&Health sectie exercise, Kinderbewegingszorg patientenzorg, Verpleegkundig Specialisten, Intensive care patientenzorg, Child Health, Datamanagement Team 1, Projectafdeling ALS, Brain, Neurologen, Kant-Smits, Kim, Bartels, Bart, Asselman, Fay Lynn, Veldhoen, Esther S., van Eijk, Ruben P.A., van der Pol, W. Ludo, Hulzebos, Erik H.J., Activity&Health sectie exercise, Kinderbewegingszorg patientenzorg, Verpleegkundig Specialisten, Intensive care patientenzorg, Child Health, Datamanagement Team 1, Projectafdeling ALS, Brain, Neurologen, Kant-Smits, Kim, Bartels, Bart, Asselman, Fay Lynn, Veldhoen, Esther S., van Eijk, Ruben P.A., van der Pol, W. Ludo, and Hulzebos, Erik H.J.

Published
2023

21. UNC13A in amyotrophic lateral sclerosis: From genetic association to therapeutic target

Author

Opleiding Neurologie, Datamanagement Team 1, Projectafdeling ALS, Brain, Translational Neuroscience, Regenerative Medicine and Stem Cells, Neurologen, Neuromuscular Disorders, Genetic Risks, Willemse, Sean W., Harley, Peter, Van Eijk, Ruben P.A., Demaegd, Koen C., Zelina, Pavol, Pasterkamp, R. Jeroen, Van Damme, Philip, Ingre, Caroline, Van Rheenen, Wouter, Veldink, Jan H., Kiernan, Matthew C., Al-Chalabi, Ammar, Van Den Berg, Leonard H., Fratta, Pietro, Van Es, Michael A., Opleiding Neurologie, Datamanagement Team 1, Projectafdeling ALS, Brain, Translational Neuroscience, Regenerative Medicine and Stem Cells, Neurologen, Neuromuscular Disorders, Genetic Risks, Willemse, Sean W., Harley, Peter, Van Eijk, Ruben P.A., Demaegd, Koen C., Zelina, Pavol, Pasterkamp, R. Jeroen, Van Damme, Philip, Ingre, Caroline, Van Rheenen, Wouter, Veldink, Jan H., Kiernan, Matthew C., Al-Chalabi, Ammar, Van Den Berg, Leonard H., Fratta, Pietro, and Van Es, Michael A.

Published
2023

22. Randomized double-blind placebo-controlled crossover trial with pyridostigmine in spinal muscular atrophy types 2-4

Author

Projectafdeling ALS, Arts-assistenten Kinderen, Brain, Kinderbewegingszorg patientenzorg, Verpleegkundig Specialisten, Activity&Health sectie child development, Datamanagement Team 1, Neurologen, Biostatistiek Onderzoek, MDL onderzoek 1, Onderzoek, Infection & Immunity, Regenerative Medicine and Stem Cells, Stam, Marloes, Wijngaarde, Camiel A., Bartels, Bart, Asselman, Fay Lynn, Otto, Louise A.M., Habets, Laura E., Van Eijk, Ruben P.A., Middelkoop, Bas M., Goedee, H. Stephan, De Groot, Janke F., Roes, Kit C.B., Schoenmakers, Marja A.G.C., Nieuwenhuis, Edward E.S., Cuppen, Inge, Van Den Berg, Leonard H., Wadman, Renske I., Van Der Pol, W. Ludo, Projectafdeling ALS, Arts-assistenten Kinderen, Brain, Kinderbewegingszorg patientenzorg, Verpleegkundig Specialisten, Activity&Health sectie child development, Datamanagement Team 1, Neurologen, Biostatistiek Onderzoek, MDL onderzoek 1, Onderzoek, Infection & Immunity, Regenerative Medicine and Stem Cells, Stam, Marloes, Wijngaarde, Camiel A., Bartels, Bart, Asselman, Fay Lynn, Otto, Louise A.M., Habets, Laura E., Van Eijk, Ruben P.A., Middelkoop, Bas M., Goedee, H. Stephan, De Groot, Janke F., Roes, Kit C.B., Schoenmakers, Marja A.G.C., Nieuwenhuis, Edward E.S., Cuppen, Inge, Van Den Berg, Leonard H., Wadman, Renske I., and Van Der Pol, W. Ludo

Published
2023

23. Clinical trials in pediatric ALS: a TRICALS feasibility study

Author

Kliest, Tessa, Van Eijk, Ruben P.A., Al-Chalabi, Ammar, Albanese, Alberto, Andersen, Peter M., Amador, Maria Del Mar, Bråthen, Geir, Brunaud-Danel, Veronique, Brylev, Lev, Camu, William, De Carvalho, Mamede, Cereda, Cristina, Cetin, Hakan, Chaverri, Delia, Chiò, Adriano, Corcia, Philippe, Couratier, Philippe, De Marchi, Fabiola, Desnuelle, Claude, Van Es, Michael A., Esteban, JesÚs, Filosto, Massimiliano, GarcÍa Redondo, Alberto, Grosskreutz, Julian, Hanemann, Clemens O., Holmøy, Trygve, Høyer, Helle, Ingre, Caroline, Koritnik, Blaz, Kuzma-Kozakiewicz, Magdalena, Lambert, Thomas, Leigh, Peter N., Lunetta, Christian, Mandrioli, Jessica, Mcdermott, Christopher J., Meyer, Thomas, Mora, Jesus S., Petri, Susanne, Povedano, Mónica, Reviers, Evy, Riva, Nilo, Roes, Kit C.B., Rubio, Miguel Á., Salachas, François, Sarafov, Stayko, Sorarù, Gianni, Stevic, Zorica, Svenstrup, Kirsten, Møller, Anette Torvin, Turner, Martin R., Van Damme, Philip, Van Leeuwen, Lucie A.G., Varona, Luis, VÁzquez Costa, Juan F., Weber, Markus, Hardiman, Orla, Van Den Berg, Leonard H., Kliest, Tessa, Van Eijk, Ruben P.A., Al-Chalabi, Ammar, Albanese, Alberto, Andersen, Peter M., Amador, Maria Del Mar, Bråthen, Geir, Brunaud-Danel, Veronique, Brylev, Lev, Camu, William, De Carvalho, Mamede, Cereda, Cristina, Cetin, Hakan, Chaverri, Delia, Chiò, Adriano, Corcia, Philippe, Couratier, Philippe, De Marchi, Fabiola, Desnuelle, Claude, Van Es, Michael A., Esteban, JesÚs, Filosto, Massimiliano, GarcÍa Redondo, Alberto, Grosskreutz, Julian, Hanemann, Clemens O., Holmøy, Trygve, Høyer, Helle, Ingre, Caroline, Koritnik, Blaz, Kuzma-Kozakiewicz, Magdalena, Lambert, Thomas, Leigh, Peter N., Lunetta, Christian, Mandrioli, Jessica, Mcdermott, Christopher J., Meyer, Thomas, Mora, Jesus S., Petri, Susanne, Povedano, Mónica, Reviers, Evy, Riva, Nilo, Roes, Kit C.B., Rubio, Miguel Á., Salachas, François, Sarafov, Stayko, Sorarù, Gianni, Stevic, Zorica, Svenstrup, Kirsten, Møller, Anette Torvin, Turner, Martin R., Van Damme, Philip, Van Leeuwen, Lucie A.G., Varona, Luis, VÁzquez Costa, Juan F., Weber, Markus, Hardiman, Orla, and Van Den Berg, Leonard H.

Abstract

Background: Pediatric investigation plans (PIPs) describe how adult drugs can be studied in children. In 2015, PIPs for Amyotrophic Lateral Sclerosis (ALS) became mandatory for European marketing-authorization of adult treatments, unless a waiver is granted by the European Medicines Agency (EMA). Objective: To assess the feasibility of clinical studies on the effect of therapy in children (<18 years) with ALS in Europe. Methods: The EMA database was searched for submitted PIPs in ALS. A questionnaire was sent to 58 European ALS centers to collect the prevalence of pediatric ALS during the past ten years, the recruitment potential for future pediatric trials, and opinions of ALS experts concerning a waiver for ALS. Results: Four PIPs were identified; two were waived and two are planned for the future. In total, 49 (84.5%) centers responded to the questionnaire. The diagnosis of 44,858 patients with ALS was reported by 46 sites; 39 of the patients had an onset < 18 years (prevalence of 0.008 cases per 100,000 or 0.087% of all diagnosed patients). The estimated recruitment potential (47 sites) was 26 pediatric patients within five years. A majority of ALS experts (75.5%) recommend a waiver should apply for ALS due to the low prevalence of pediatric ALS. Conclusions: ALS with an onset before 18 years is extremely rare and may be a distinct entity from adult ALS. Conducting studies on the effect of disease-modifying therapy in pediatric ALS may involve lengthy recruitment periods, high costs, ethical/legal implications, challenges in trial design and limited information.

Published
2022
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24. Lithium carbonate in amyotrophic lateral sclerosis patients homozygous for the C-allele at SNP rs12608932 in UNC13A: protocol for a confirmatory, randomized, group-sequential, event-driven, double-blind, placebo-controlled trial

Author

UMC Utrecht Academie, Opleiding Neurologie, Biostatistiek Onderzoek, Genetica, Genetica Sectie Genoomdiagnostiek, Brain, Projectafdeling ALS, Neurologen, Regenerative Medicine and Stem Cells, Neuromuscular Disorders, Datamanagement Team 1, Willemse, Sean W., Roes, Kit C.B., Van Damme, Philip, Hardiman, Orla, Ingre, Caroline, Povedano, Monica, Wray, Naomi R., Gijzen, Marleen, de Pagter, Mirjam S., Demaegd, Koen C., Janse, Annemarie F.C., Vink, Roel G., Sleutjes, Boudewijn T.H.M., Chiò, Adriano, Corcia, Philippe, Reviers, Evy, Al-Chalabi, Ammar, Kiernan, Matthew C., van den Berg, Leonard H., van Es, Michael A., van Eijk, Ruben P.A., UMC Utrecht Academie, Opleiding Neurologie, Biostatistiek Onderzoek, Genetica, Genetica Sectie Genoomdiagnostiek, Brain, Projectafdeling ALS, Neurologen, Regenerative Medicine and Stem Cells, Neuromuscular Disorders, Datamanagement Team 1, Willemse, Sean W., Roes, Kit C.B., Van Damme, Philip, Hardiman, Orla, Ingre, Caroline, Povedano, Monica, Wray, Naomi R., Gijzen, Marleen, de Pagter, Mirjam S., Demaegd, Koen C., Janse, Annemarie F.C., Vink, Roel G., Sleutjes, Boudewijn T.H.M., Chiò, Adriano, Corcia, Philippe, Reviers, Evy, Al-Chalabi, Ammar, Kiernan, Matthew C., van den Berg, Leonard H., van Es, Michael A., and van Eijk, Ruben P.A.

Published
2022

25. 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

26. Natural history of respiratory muscle strength in spinal muscular atrophy: a prospective national cohort study

Author

Intensive care patientenzorg, Child Health, Opleiding Neurologie, Brain, Activity&Health sectie exercise, Neurologen, Datamanagement & Project Ondersteuning, Projectafdeling ALS, Verpleegkundig Specialisten, Projectafdeling SvS, Kinderbewegingszorg patientenzorg, Longziekten, Other research (not in main researchprogram), Longziekten patientenzorg, Speerpunt Child Health, Infection & Immunity, Veldhoen, Esther S., Wijngaarde, Camiel A., Hulzebos, Erik H.J., Wösten-van Asperen, Roelie M., Wadman, Renske I., van Eijk, Ruben P.A., Asselman, Fay Lynn, Stam, Marloes, Otto, Louise A.M., Cuppen, Inge, Scheijmans, Feline E.V., den Oudenrijn, Laura P.Verweij van, Bartels, Bart, Gaytant, Michael A., van der Ent, Cornelis K., van der Pol, W. Ludo, Intensive care patientenzorg, Child Health, Opleiding Neurologie, Brain, Activity&Health sectie exercise, Neurologen, Datamanagement & Project Ondersteuning, Projectafdeling ALS, Verpleegkundig Specialisten, Projectafdeling SvS, Kinderbewegingszorg patientenzorg, Longziekten, Other research (not in main researchprogram), Longziekten patientenzorg, Speerpunt Child Health, Infection & Immunity, Veldhoen, Esther S., Wijngaarde, Camiel A., Hulzebos, Erik H.J., Wösten-van Asperen, Roelie M., Wadman, Renske I., van Eijk, Ruben P.A., Asselman, Fay Lynn, Stam, Marloes, Otto, Louise A.M., Cuppen, Inge, Scheijmans, Feline E.V., den Oudenrijn, Laura P.Verweij van, Bartels, Bart, Gaytant, Michael A., van der Ent, Cornelis K., and van der Pol, W. Ludo

Published
2022

28. Clinical trials in pediatric ALS: a TRICALS feasibility study

Author

Kliest, Tessa, primary, Van Eijk, Ruben P.A., additional, Al-Chalabi, Ammar, additional, Albanese, Alberto, additional, Andersen, Peter M., additional, Amador, Maria Del Mar, additional, BrÅthen, Geir, additional, Brunaud-Danel, Veronique, additional, Brylev, Lev, additional, Camu, William, additional, De Carvalho, Mamede, additional, Cereda, Cristina, additional, Cetin, Hakan, additional, Chaverri, Delia, additional, Chiò, Adriano, additional, Corcia, Philippe, additional, Couratier, Philippe, additional, De Marchi, Fabiola, additional, Desnuelle, Claude, additional, Van Es, Michael A., additional, Esteban, JesÚs, additional, Filosto, Massimiliano, additional, GarcÍa Redondo, Alberto, additional, Grosskreutz, Julian, additional, Hanemann, Clemens O., additional, HolmØy, Trygve, additional, HØyer, Helle, additional, Ingre, Caroline, additional, Koritnik, Blaz, additional, Kuzma-Kozakiewicz, Magdalena, additional, Lambert, Thomas, additional, Leigh, Peter N., additional, Lunetta, Christian, additional, Mandrioli, Jessica, additional, Mcdermott, Christopher J., additional, Meyer, Thomas, additional, Mora, Jesus S., additional, Petri, Susanne, additional, Povedano, MÓnica, additional, Reviers, Evy, additional, Riva, Nilo, additional, Roes, Kit C.B., additional, Rubio, Miguel Á., additional, Salachas, FranÇois, additional, Sarafov, Stayko, additional, SorarÙ, Gianni, additional, Stevic, Zorica, additional, Svenstrup, Kirsten, additional, MØller, Anette Torvin, additional, Turner, Martin R., additional, Van Damme, Philip, additional, Van Leeuwen, Lucie A.G., additional, Varona, Luis, additional, VÁzquez Costa, Juan F., additional, Weber, Markus, additional, Hardiman, Orla, additional, and Van Den Berg, Leonard H., additional

Published
2022
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30. 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. Acceptability and potential benefit of a self-compassion intervention for people living with amyotrophic lateral sclerosis: a mixed methods pilot study.

Author

Sommers-Spijkerman, Marion, Zwarts-Engelbert, Aimée, Kruitwagen-Van Reenen, Esther, Van Eijk, Ruben P.A., Visser-Meily, Johanna M. A., Heijmans, Emmy, Austin, Judith, Drossaert, Constance, Bohlmeijer, Ernst, and Beelen, Anita

Subjects
*AMYOTROPHIC lateral sclerosis, *SELF-compassion, *PSYCHOLOGICAL distress, *QUALITY of life, *CAREGIVERS
Abstract

AbstractObjective: This proof-of-concept study aimed to explore the acceptability and potential benefit of a self-guided online self-compassion intervention to aid resilient coping and reduce emotional distress among patients and caregivers living with ALS. Methods: A single-arm pilot study was conducted in 20 adults living with ALS either as a patient or as a caregiver. Acceptability was examined using questionnaires (n = 20) and semi-structured interviews (n = 9). Potential benefit was assessed as changes in self-compassion, self-criticism and emotional distress, determined using psychological questionnaires at 3 and 6 weeks. Questionnaires were analyzed using linear mixed-effects models and interview data using inductive thematic analysis. Results: Out of 20 participants who started the intervention, 16 completed the study (80%). The majority of study completers (12/16) were satisfied with the intervention, but the data suggest room for improvement in terms of personalization. Qualitative data revealed multiple psychological benefits of using the intervention, including self-kindness, emotional self-awareness and savoring. Although not statistically significant, quantitative data showed positive trends with increased self-compassion (mean difference: 2.07; 95% CI: −.5.76 − 1.63) and reduced self-criticism (mean difference: −2.62; 95% CI: −.1.97 − 7.23) and emotional distress (mean difference: −2.49; 95% CI: −.51 − 5.50) at week 6 compared to baseline. Conclusions: The findings suggest that a self-compassion intervention is acceptable to people living with ALS, but its beneficial effects and the mechanisms involved have yet to be established in larger and more diverse samples, using controlled designs. [ABSTRACT FROM AUTHOR]

Published
2024
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