Towards early disease modification of Parkinson’s disease: a review of lessons learned in the Alzheimer field

Smedinga, Marthe; Darweesh, Sirwan K.L.; Bloem, Bastiaan R.; Post, Bart; Richard, Edo

doi:10.1007/s00415-020-10162-5

Cited by 19 publications

(10 citation statements)

References 71 publications

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“…We identified 11 publications on ethical implications of prognostic counseling, including seven publications on RBD 4,5,7‐11 and four publications on PD in general 19‐22 . Two studies used questionnaires addressing affected individuals: one study questioned first‐degree relatives of PD patients 21 and one study sought the opinion of already affected PD patients 19 .…”

Section: Resultsmentioning

confidence: 99%

“…We identified 11 publications on ethical implications of prognostic counseling, including seven publications on RBD 4,5,[7][8][9][10][11] and four publications on PD in general. [19][20][21][22] Two studies used questionnaires addressing affected individuals: one study questioned first-degree relatives of PD patients 21 and one study sought the opinion of already affected PD patients. 19 The remaining studies included personal recommendations or experiences, partly in combination with (semi)structured literature research, 4,5,8,9,11,20,23 a retrospective analysis of medical records, 10 and an expert survey on RBD 7 (see Table 1).…”

Section: Literature Searchmentioning

confidence: 99%

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Risk Disclosure in Prodromal Parkinson's Disease

et al. 2021

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A BS TRACT: Background: Impressive progress in the understanding of the prodromal phase of Parkinson's disease (PD) in recent years has enabled the generation of disease prediction models. However, a remaining diagnostic uncertainty and lack of therapeutic options for affected individuals has resulted in a variety of ethical issues that have not to date been addressed sufficiently. Moreover, differences in the specificity of prodromal symptoms and possible subtypes of PD, especially the presence of rapid eye movement (REM) sleep behavior disorder (RBD), may have an important impact on prognostic counseling. Objectives: To derive a guideline for risk disclosure in prodromal PD based on the current literature and expert opinion. Methods: We performed (1) a literature review on prognostic counseling in PD and (2) consulted with international experts on prodromal PD using a semi-structured questionnaire based on a Delphi approach to evaluate recommendations for risk disclosure in PD. Results:The literature research revealed only 11 publications addressing prognostic counseling, with only two studies directly addressing affected individuals and most studies focusing on risk disclosure in RBD. The expert survey revealed the importance of distinguishing between individuals with and without RBD in prognostic counseling. Conclusions: Based on the current literature and expert recommendations, a guideline for risk disclosure in prodromal PD for clinical care and research could be elaborated. Prognostic counseling should include differentiation between individuals with and without RBD, taking into account the high uncertainty of risk calculation in RBD-negative prodromal PD.

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Section: Resultsmentioning

confidence: 99%

Section: Literature Searchmentioning

confidence: 99%

Risk Disclosure in Prodromal Parkinson's Disease

et al. 2021

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“…The disease results in a considerable burden for patients as well as insurance and social costs [4,5]. Similar to dementia, diagnosing the disease early is important in order to improve care [6] or even intervene preventatively [7,8]. As a result, early and prodromal symptoms have been the focus of considerable research over the last 20 years [6,9,10].…”

Section: Introductionmentioning

confidence: 99%

Identification of Prodromal Presentations of Parkinson’s Disease among Primary Care Outpatients in Germany

Bohlken¹,

Schrag²,

Riedel‐Heller³

et al. 2021

Neuroepidemiology

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Background: This study aimed to identify clinical features that predate the diagnosis of PD in a primary care setting. Methods: This retrospective case-control study was based on data from the Disease Analyzer database (IQVIA) and included 17,702 patients with Parkinson’s disease and 17,702 non-PD controls matched for age, sex, and index year. We analyzed the prevalence of 15 defined diagnoses and symptoms documented within 2 years, ≥2 to <5, and ≥5 to <10 years prior to the index date in patients with and without PD. Logistic regression analyses were conducted to assess the association between PD and the predefined diagnoses. Results: The prevalence of motor, neuropsychiatric and autonomic features was higher in those with a later diagnosis of Parkinson’s disease than controls for all three periods except for rigidity in the ≥2 to <5 and ≥5 to <10-year periods and erectile dysfunction in the most recent period before diagnosis. The clinical presentation recorded in the greatest percentage of patients was depression, followed by dizziness, insomnia, and constipation, but these were also common in the control population. The odds ratios were highest for increase in tremor, followed by balance impairment and memory problems, particularly in the latest period before diagnosis, and by constipation particularly in the earliest period examined. Conclusion: The prodromal features of PD could be identified in this large primary care database in Germany with similar results to those found in previous database studies despite differences in methodologies and systems.

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“…For example, population-based studies have provided crucial insights into the role of vascular factors in the etiology of AD (68,69). Taking a broader perspective and recognizing similarities between PD and AD will help to make further progress in PD research (70)(71)(72).…”

Section: Learning From Population-based Studies In Alzheimer's Diseasementioning

confidence: 99%

Probing the Pre-diagnostic Phase of Parkinson's Disease in Population-Based Studies

Dommershuijsen

Ikram

2021

Front. Neurol.

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Parkinson's disease covers a wide spectrum of symptoms, ranging from early non-motor symptoms to the characteristic bradykinesia, tremor and rigidity. Although differences in the symptomatology of Parkinson's disease are increasingly recognized, there is still a lack of insight into the heterogeneity of the pre-diagnostic phase of Parkinson's disease. In this perspective, we highlight three aspects regarding the role of population-based studies in providing new insights into the heterogeneity of pre-diagnostic Parkinson's disease. First we describe several specific advantages of population-based cohort studies, including the design which overcomes some common biases, the broad data collection and the high external validity. Second, we draw a parallel with the field of Alzheimer's disease to provide future directions to uncover the heterogeneity of pre-diagnostic Parkinson's disease. Finally, we anticipate on the emergence of prevention and disease-modification trials and the potential role of population-based studies herein. In the coming years, bridging gaps between study designs will be essential to make vital advances in elucidating the heterogeneity of pre-diagnostic Parkinson's disease.

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Towards early disease modification of Parkinson’s disease: a review of lessons learned in the Alzheimer field

Cited by 19 publications

References 71 publications

Risk Disclosure in Prodromal Parkinson's Disease

Risk Disclosure in Prodromal Parkinson's Disease

Identification of Prodromal Presentations of Parkinson’s Disease among Primary Care Outpatients in Germany

Probing the Pre-diagnostic Phase of Parkinson's Disease in Population-Based Studies

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