Analysis and validation of a Parkinson's disease register as a recruitment tool for clinical studies.

Promotion of research is a key strategy of the National Health Service (NHS). Currently, many patients are not afforded the opportunity to participate in clinical studies. A register of research-interested patients has the potential to maximise inclusivity. We have established a register of research-interested patients with Parkinson's disease within the South West of England, with pragmatic inclusion criteria and multiple recruitment routes. We undertook an analysis of the register, investigation of its utility as a recruitment tool and a survey of recruiters. There were 529 active participants; 30% were self-referred and 70% were recruited by a healthcare practitioner. Response rate to annual questionnaires was 86.5%. Staff time required for pack preparation, recruitment and data entry was 15 min per new recruit and 5 min per follow-up questionnaire. In total, 85% of recruiters viewed the register positively. A single mailing to participants resulted in a recruitment rate that significantly exceeded that achieved by traditional recruitment methods

Traitement efficace de l’épilepsie partielle continue avec le Félbamate

Authors report two patients with epilepsia partialis continua refractory to many pharmacological treatments who responded to Felbamate. The first patient was a 41 year-old male with a large cavernous angioma of the right hemisphere, who developed epilepsia partialis continua (EPC) with interictal Todd’s palsy in the absence of new bleeding. High doses of Primidone, Clorazepate, Topiramate, and Diazepam resulted in profound sedation but no effect on EPC. He had previously failed Phenytoin, Phenobarbital, Carbamazepine, Valproate, and Gabapentin. Felbamate was titrated up to 3600 mg/d., and EPC stopped over three days, and he regained full power in hs left hand. Felbamate was discontinued after a month, because of its potential chronic toxicity. EPC did not recur. The second patient was a 27 year-old female with EPC of the left arm since age 15. She became seizure-free on Felbamate, but when the drug became unavailable to her a year later, EPC returned, and EEG showed right polyspikes/waves of low amplitude coming from the central and anterior parietal regions, which were synchronous with her arm movements by video and EMG. She declined surgery. These cases suggest that Felbamate might be useful as a drug of last resort for pharmacoresistant EPC.Les auteurs rapportent deux patients dont l’épilepsie partielle continue (EPC) était résistante a de nombreux anticonvulsivants, et chez qui une réponse favorable a été notée sous Félbamate. Le premier patient était un home de 41 ans, qui souffrait d’un angiome caverneux occupant un gros volume dans l’hémisphère droit. Son EPC du bras droit, accompagnée d’une paralysie de Todd, ne répondit pas a des doses élevées de Primidone, Clonazepam, Clorazepate et Topiramate, qui causaient une sédation sévère. Le Felbamate fut augmenté jusqu’a 3600 mg/ jour, et l’EPC ainsi que la paralysie de Todd ont disparu, Le Félbamate fut arrêté après un mois, sans retour d’EPC. La seconde patiente était une femme de 27 ans qui souffrait d’EPC du bras droit depuis l’âge de 15 ans. L’EPC disparut sous traitement au Félbamate mais a récidivé quand ce traitement fut interrompu un an plus tard. L’EEG a montré des anomalies épileptiques da basse amplitude provenant des régions pariétales antérieurs et centrales droites, qui furent synchrones de ses mouvements du bras grâce aux données vidéo-EEG et EMG. Cette patente a refusé toute chirurgie. Ces cas suggèrent que le Félbamate, malgré sa toxicité, pourrait être considéré comme une bonne alternative dans les cas d’EPC réfractaire aux médicaments antiépileptiques usuels

Early factors for predicting discontinuation to subcutaneous Apomorphine infusion in Parkinson's disease:A prospective analysis of the Thai Apomorphine Registry

INTRODUCTION: Although continuous subcutaneous apomorphine infusion (CSAI) is an effective therapy for Parkinson's disease (PD) with motor fluctuations, data from Asian cohorts is limited. The therapy is often discontinued due to the complexity of its delivery. METHODS: Fifty-one PD patients undergoing CSAI as an add-on therapy were enrolled in the Thai Apomorphine Registry, an electronic database that recorded clinical characteristics and parameters during the 14-consecutive-day titration and long-term follow-up. Factors at the time of titration were documented in order to identify predictors of long-term discontinuation. RESULTS: Following initiation, PD patients were administered a mean CSAI dose of 5.89 mg/h (SD 1.36) over a mean time of 12.28 h (SD 1.90) each day. The mean follow-up period was 626.2 days (SD 619.17). Significant reductions in UPDRS-I, II, III, and IV scores, total NMSQ score, PDQ-8 score, daily off and dyskinesia hours, Timed Up and Go test, walking step test, levodopa-equivalent daily dose, number of times a day the levodopa was taken versus pre-CSAI values were observed (p < 0.05, each). Thirty-five (68.6%) patients discontinued during the follow-up period. Relative risks of variables recorded at the time of titration that determined discontinuation of CSAI therapy were an absence of full-time caregivers, achieving a daily off hours reduction <3.5 h, and NMSQ scores at the time of CSAI titration ≥9.5 points. CONCLUSION: Identifying factors that predict discontinuation of CSAI at the time of its initiation may help physicians to better understand the patient's drug response and how to manage them long-term

Management of Spastic Paresis and Cervical Dystonia: access to Therapeutic Innovations Through an International Program of Practical Courses

Purpose: Our purpose was to determine satisfaction and confidence of the Ixcellence Network training program on health care practitioners using botulinum toxin A (BoNT-A) for neurologic disorders, including spastic paresis and cervical dystonia. / Methods: The Ixcellence Network training program was designed by a scientific committee of 6 experts and then tested at centers in Europe, and Latin America. The training, provided by 16 experienced neurologists and rehabilitation specialists, consisted of theoretic and practical sessions that covered the different stages of the patient's journey from diagnosis to tailored treatment and rehabilitation. Trainees' feedback and the impact on participants' practice were evaluated by 2 individual questionnaires, at the end of the session (T0) and at 6 months (T6). Trainers' feedback was also collected through an individual questionnaire. / Findings: Between September 2012 and December 2017, 728 trained physicians participated in training programs with 48%, 23%, and 29% of attendees participating in training sessions dedicated to adult spastic paresis, child spastic paresis, and cervical dystonia, respectively. At T0, 93% of attendees thought that they had been given new information and 90% thought that the training would change their daily practice. This was confirmed at T6 by 93% of respondents. Trainees were highly satisfied with the program, in particular with the practical sessions. Trainers expectations were met for attendees' level of expertise, motivation, language, and participation. / Implications: In this descriptive study, we show that the Ixcellence Network program represents a new educational approach to promote consistency in care practices and dissemination of expertise on the use of BoNT-A for neurologic disorders.

Tardive dyskinesia in Asia— current clinical practice and the role of neurologists in the care pathway

Tardive dyskinesia (TD) is a movement disorder that can arise as a side effect of treatment with dopamine receptor-blocking agents (DRBAs), including antipsychotic drugs (APDs) used to manage psychotic illnesses. Second-generation APDs (SGAs) are often preferred to first-generation drugs due to their lower propensity to cause TD, however many SGAs-treated patients still develop the condition. Although TD is a global health concern, evidence regarding the occurrence of TD and how it is managed in Asian countries is currently limited. This article reports the results of a systematic review of the published literature on TD focusing on its prevalence, types of patients, knowledge of the condition, causative factors, and usual treatment pathways in clinical practice in Asian countries. Epidemiological data suggest that the prevalence of TD is increasing globally due to an overall rise in APD use, contributing factors being polypharmacy with multiple APDs, the use of higher than necessary doses, and off-label use for non-psychotic indications. Although exact prevalence figures for TD in Asian countries are difficult to define, there is a similar pattern of rising APD use which will result in increasing numbers of TD patients in this region. These issues need to be addressed and strategies developed to minimize TD risk and manage this disabling condition which impacts patients' quality of life and daily functioning. To date, both research into TD has been predominantly psychiatry focused and the perspectives from neurologists regarding the clinical management of this challenging condition are scarce. However, neurologists have an essential role in managing the movement disorders manifestations that characterize TD. Optimum management of TD, therefore, should ideally involve collaboration between psychiatrists and neurologists in joint care pathways, wherever practical. Collaborative pathways are proposed in this article, and the challenges that will need to be addressed in Asian countries to improve the care of people with TD are highlighted, with a focus on the neurologist's viewpoint and the implications for the management of TD globally

Sustained response in early responders to safinamide in patients with Parkinson's disease and motor fluctuations: A post hoc analysis of the SETTLE study

Safinamide is a selective, reversible, monoamine oxidase B inhibitor for the treatment of patients with Parkinson's disease (PD) and motor fluctuations. This was a post hoc analysis of the SETTLE study, in which patients with PD and motor fluctuations were randomly assigned to 24-week treatment with safinamide (50 mg/day for 2 weeks, increased to 100 mg/day if tolerated) or placebo. In the present analysis, responders were defined according to their treatment responses at Week 2 and Week 24 based on changes in ON-time without troublesome dyskinesia from baseline with cutoffs of 1 hour. It was found that 81% (103/127) of the responders at Week 2 maintained the response through Week 24 in the safinamide group. Other outcomes did not necessarily coincide with the ON-time response; however, “Early” responders who showed a treatment response at both Week 2 and Week 24 had substantial improvements from baseline in OFF-time, UPDRS Part II and III scores, and PDQ-39 summary index scores through Week 24. The safinamide group had a higher proportion of early responders than the placebo group (39% vs 20%, p &lt; 0.0001). At baseline, early responders in the safinamide group had significantly higher UPDRS Part II and III scores, shorter ON-time, and longer OFF-time than the other responder populations. In conclusion, the results of the present post hoc analysis suggest that patients with a short ON-time, severe motor symptoms, and highly compromised activities of daily living can benefit from safinamide early in treatment and over the long term