Arif Iskandar

Key Interventions in Friedreich's Ataxia and Their Impact on Patient Outcomes: A Systematic Review

Dorota Sarwinska, Maresa Buchholz, Arif Iskandar, Marcus Grobe‐Einsler et autres

Friedreich's ataxia (FA) is a rare neurodegenerative disease with multisystemic symptoms that requires multidisciplinary care. This systematic review summarizes available pharmacological and nonpharmacological interventions, their outcomes, and alignment with patient-centered care domains, as well as their impact on these domains. The publication …

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Transitional Life Events in Friedreich Ataxia: Differential Age at Onset Perspectives

Arif Iskandar, Maresa Buchholz, Dorota Sarwinska, Stéphanie Borel et autres

Abstract Friedreich’s ataxia (FA) is a rare, autosomal recessive neurodegenerative disease that primarily affects children and adolescents in their transition to adulthood, which is associated with several adverse life events caused by the disease progression. This article aims to describe life events …

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Cerebellar cognitive-affective syndrome in Friedreich Ataxia

Emilien Petit, Sabrina Sayah, Elisabetta Indelicato, Stéphanie Borel et autres

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A Patient-Reported Outcome Measure of Communication Difficulties in Friedreich Ataxia: COMATAX.

Maresa Buchholz, Victoire Monier, Claire Ewenczyk, Anna Heinzmann et autres

Abstract Background and Objectives: Friedreich ataxia (FA) causes progressive impairment of communication due to gradual deterioration of speech, associated with impaired hearing, socio-cognitive and language skills. There is an urgent need to investigate the impact of this multiparametric alteration on patients’ lives. …

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Patient-reported, psychosocial and health economic outcomes in mild to moderate Friedreich's ataxia: baseline results of the PROFA study

Marcus Grobe-Einsler, Stéphanie Borel, Maresa Buchholz, Sabrina Sayah et autres

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COMATAX

Maresa Buchholz, Victoire Monier, Claire Ewenczyk, Anna Heinzmann et autres

Patient-reported, psychosocial and health economic outcomes in mild to moderate Friedreich's ataxia: baseline results of the PROFA study

Marcus Grobe‐Einsler, Stéphanie Borel, Maresa Buchholz, Sabrina Sayah et autres

Background: Friedreich ataxia (FA) is the most common autosomal recessive ataxia. Little attention has been paid to FA's impact on patient-reported, psychosocial, and health-economic outcomes. This study aimed to report these outcomes across FA's disability stages 1-5. Methods: We assessed patients in …

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Differentiation between early and severe stages of dementia using diagnosis, prescription and utilization patterns

Moritz Platen, Maresa Buchholz, Anika Raedke, Annelie Scharf et autres

BACKGROUND: Routinely collected claims data often lack clinical parameters like dementia severity, which are essential for treatments targeting early disease stages. Diagnoses, prescriptions, and healthcare service utilization patterns are commonly used to infer dementia severity, but evidence validating these patterns is limited. …

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Differentiation Between Early and Severe Stages of Dementia in Claims Data Based on Diagnosis, Prescription, and Utilization Patterns

Moritz Platen, Maresa Buchholz, Anika Rädke, E Glaser et autres

INTRODUCTION: Claims data typically lack clinical parameters such as dementia severity, limiting insights into disease progression and related healthcare utilization and costs. Although diagnoses, prescriptions, and utilization patterns may serve as proxies, their validity is unclear. This study aimed to identify and …

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A head-to-head comparison of the validity and predictive ability for health outcomes of diagnosis versus medication-based comorbidity indices

Moritz Platen, Maresa Buchholz, Anika Rädke, Fabian Kleinke et autres

Abstract Background Various comorbidity indices have been validated for individual health outcomes. However, systematic concurrent comparisons of multiple outcome measures in a single study remain relatively underrepresented but needed for practical decision support. Aims To compare the performance of the Charlson Comorbidity …

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Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients

Arif Iskandar, Maresa Buchholz, Iris Blotenberg, Tanja Schmitz‐Hübsch et autres

INTRODUCTION: Due to limited treatment options, managing symptoms has dominated care for Spinocerebellar Ataxia (SCA). Little attention has been given to health-related quality of life (HRQoL) and depressive symptoms experienced by patients across disease duration. OBJECTIVE: To investigate the course of HRQoL …

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Identifying and Addressing Unmet Needs in Dementia: The Role of Care Access and Psychosocial Support

Annelie Scharf, Bernhard Michalowsky, Anika Rädke, Fabian Kleinke et autres

OBJECTIVES: People with dementia often have various unmet care needs across physical, psychological, environmental, and social domains. There's a need to explore the association between domains of unmet needs and characteristics of people with dementia. The aim of this paper was to …

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