Improving patient participation in Parkinson‘s clinical trials: the experience of the Michael J Fox Foundation

Chowdhury, Sohini; Meunier, Claire C.; Cappelletti, Lily; Sherer, Todd

doi:10.4155/cli.13.127

Cited by 8 publications

(7 citation statements)

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“…The occurrence and severity (troublesome vs. nontroublesome) of dyskinesia has been a primary or secondary objective in many recent clinical trials conducted in both early‐ and advanced‐stage patients. However, recruitment in these studies has become more difficult generally because of poor recruitment to PD‐related clinical trials including those where significant involuntary movements that meet the inclusion criteria are required . Our perception is that marked dyskinesia is not so prevalent in the patient population as in previous eras, it is not a matter of clinical concern, and it does not “worry” the patients affected.…”

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confidence: 99%

Should there be less emphasis on levodopa‐induced dyskinesia in Parkinson's disease?

Jenner

Antonini

2019

Movement Disorders

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Soon after the introduction of levodopa in to the treatment of Parkinson's disease (PD), 1 marked involuntary movements or dyskinesia were identified as a common serious and potentially disabling side effect of treatment. 2 The drug developed a negative reputation for the high incidence of dyskinesia-although much of this was because of the high dosage used and the introduction of treatment in patients with advanced, but previously untreated, disease. 3 Later studies reported that early use of L-dopa resulted in a high prevalence of involuntary movements of up to 36% within 5 years and up to 88% within 10 years. 4,5 These reports and the clinical experience of early initiation of L-dopa therapy led to the widespread view that dyskinesia was an almost inevitable consequence of the use of L-dopa. Not surprisingly, the medical community and the patient population took fright and the early initiation of L-dopa therapy diminished. Avoiding L-dopa treatment until necessary became a strategy for treating the younger patient population and eventually led to the early use of dopamine agonist drugs that appeared to result in a lower incidence of dyskinesia. 3 However, more recently, L-dopa has made a return to frontline treatment using more careful treatment paradigms and using lower daily doses that seem to lessen the risk of dyskinesia induction. The PDMED study has also consolidated the role of initiating treatment of PD with L-dopa, and the current view is that there is little evidence to justify withholding the drug in early disease. 6 Nevertheless, recent reports would, at first glance, seem to suggest that dyskinesia has not gone away as a problem of clinical significance. In 2012, Manson and colleagues reviewed the incidence of dyskinesia in PD and concluded that 40% to 50% of patients develop dyskinesia within 5 years of initiation of treatment and that this increases to 50% to 75% after 10 years. 7 Also, Ahlskog and Muenter, in their 2001 review, showed that the prevalence of dyskinesia increases from a nil dyskinesia state in recently diagnosed patients to 60.7% to 95.5% in patients with a disease duration of 9 to 15 years after L-dopa treatment of variable dose schedules. 5 The data is in overall agreement with another review by Tran and colleagues, 8 which also pointed out that the prevalence of dyskinesia depended on the age of onset of PD, disease duration, and severity and duration of L-dopa therapy-as might be expected from past publications. A further pointer toward a high dyskinesia rate is also evident in the CALM-PD trial, where 222 patients were randomised to receive either pramipexole or L-dopa, and it was shown that 6 years after initiation of treatment, prevalence of dyskinesia was high, at 68%, for L-dopatreated patients and 50% for those on pramipexole. Disabling and painful dyskinesia, however, were almost nonexistent in both groups (2.8% and 3.5% reported disabling dyskinesia and 5.6% and 3.5% reported painful dyskinesia, respectively). 17 In a community-based study of 124 patients, Schrag an...

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confidence: 99%

Should there be less emphasis on levodopa‐induced dyskinesia in Parkinson's disease?

Jenner

Antonini

2019

Movement Disorders

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“…Time demands, absences from work, medical problems, travelling to appointments and concerns about confidentiality are frequently cited as personal factors that influence prospective participants’ willingness to participate in research (Gatny & Axinn , Chowdhury et al . , Normansell et al . ).…”

Section: Introductionmentioning

confidence: 99%

“…Good quality research depends, in part, on successful recruitment and retention of participants (Draper et al 2009). In recent decades, there has been a gradual decline in research participation and recruitment of participants in nursing research has become increasingly challenging (Permuth-Wey & Borenstein 2009, Chowdhury et al 2014. Time demands, absences from work, medical problems, travelling to appointments and concerns about confidentiality are frequently cited as personal factors that influence prospective participants' willingness to participate in research (Gatny & Axinn 2012, Chowdhury et al 2014, Normansell et al 2016.…”

Section: Introductionmentioning

confidence: 99%

“…In recent decades, there has been a gradual decline in research participation and recruitment of participants in nursing research has become increasingly challenging (Permuth-Wey & Borenstein 2009, Chowdhury et al 2014. Time demands, absences from work, medical problems, travelling to appointments and concerns about confidentiality are frequently cited as personal factors that influence prospective participants' willingness to participate in research (Gatny & Axinn 2012, Chowdhury et al 2014, Normansell et al 2016. Other reasons given by those who are unwilling to participate include a perceived risk of harm, a reluctance to be the subject of an experiment (not being a 'guinea pig') and the expectation that the research would not personally benefit them (Geppert et al 2014, Bouida et al 2016.…”

Section: Introductionmentioning

confidence: 99%

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Paying patient and caregiver research participants: putting theory into practice

Polacsek

Boardman

McCann

2016

Journal of Advanced Nursing

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“…PD, the second most common neurodegenerative disease in the world, is characterized by progressive motor symptoms marked by slowness of movement, gait problems, rigidity and tremors (Chowdhury et al 2014). Later symptoms can include thinking, sleep, emotional and behavioral problems including dementia (Fox 2013).…”

Section: Introductionmentioning

confidence: 99%

Determination of l-dopa (l-3, 4-dihydroxyphenylalanine) content of some faba bean (vicia faba l.) genotypes

Topal

Bozoğlu

2016

Tarım Bilimleri Dergisi

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Faba bean, reflecting all properties of legume crops such as soil improvement and benefit of human health, also contains L-dopa which can be used to cure Parkinson's disease, is a rare plant. The study was conducted in Samsun province to determine the L-dopa content of leaf, flower and pod of faba bean genotypes. Four cultivars and 18 lines were sown on November in randomized complete blocks design with 3 replications. Samples were taken from leaves at vegatative period, flowers and fresh pods at generative period of faba bean. The L-dopa content was determined by HPLC. According to the result of variance analysis, the differences among genotypes for L-dopa content of flowers and fresh pods were found significant (P<0.01). L-dopa content of leaves, flowers and fresh pods varied between 10. 88-33.41, 40.95-96.37; 4.16-52.28 mg kg -1 , respectively. L-dopa content of flowers of 20 genotypes, except a cultivar and a line, were found in same group statistically. Avarage L-dopa content of leaf, flower and pod of faba bean were 19.36, 75.87 and 25.27 mg kg -1 , respectively. The most common form of consumption of faba bean in Turkey and treatmet for Parkinson's disease in some countries is fresh pod. However this study showed that L-dopa amount in flower is higher (P<0.01) than that of leaf and pod. Results of this study revealed that L-dopa content of 7 lines were richer than that of others. If agronomic characters of 7 lines are well, their potential to become a new variety should be investigated.

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Improving patient participation in Parkinson‘s clinical trials: the experience of the Michael J Fox Foundation

Cited by 8 publications

References 8 publications

Should there be less emphasis on levodopa‐induced dyskinesia in Parkinson's disease?

Should there be less emphasis on levodopa‐induced dyskinesia in Parkinson's disease?

Paying patient and caregiver research participants: putting theory into practice

Determination of l-dopa (l-3, 4-dihydroxyphenylalanine) content of some faba bean (vicia faba l.) genotypes

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