scholarly journals Virtual research visits and direct-to-consumer genetic testing in Parkinson’s disease

2015 ◽  
Vol 1 ◽  
pp. 205520761559299 ◽  
Author(s):  
E Ray Dorsey ◽  
Kristin C Darwin ◽  
Samara Mohammed ◽  
Sean Donohue ◽  
Alyssa Tethal ◽  
...  
2004 ◽  
Vol 20 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Aideen McInerney-Leo ◽  
Donald W. Hadley ◽  
Katrina Gwinn-Hardy ◽  
John Hardy

2007 ◽  
Vol 252 (2) ◽  
pp. 113-120 ◽  
Author(s):  
Eng-King Tan ◽  
Jennie Lee ◽  
Christine Hunter ◽  
Lina Shinawi ◽  
S. Fook-Chong ◽  
...  

2014 ◽  
Vol 24 (2) ◽  
pp. 238-246 ◽  
Author(s):  
Manisha Gupte ◽  
Roy N. Alcalay ◽  
Helen Mejia-Santana ◽  
Deborah Raymond ◽  
Rachel Saunders-Pullman ◽  
...  

2021 ◽  
Vol 21 (4) ◽  
Author(s):  
Lola Cook ◽  
Jeanine Schulze ◽  
Anna Naito ◽  
Roy N. Alcalay

Author(s):  
Lola Cook ◽  
Jeanine Schulze ◽  
Jennifer Verbrugge ◽  
James C. Beck ◽  
Karen S. Marder ◽  
...  

2021 ◽  
Author(s):  
Moataz Dowaidar

This review addresses the past and current states of genetic testing for Parkinson's disease based on the available data. In short, neurologists rarely perform genetic testing for Parkinson's disease, and evidence suggests that many patients with major genetic variants go undiagnosed. For patients, caregivers, and families, we looked into the various clinical and personal applications of genetic information. Consumer interest and demand for genetic testing in general, and for Parkinson's disease in particular, is increasing. Furthermore, researchers now have a better understanding of the genetic phenotypes of Parkinson's disease; there is more access to free or low-cost genetic testing and counseling; and patients with specific PD genetic variants can now participate in interventional clinical trials. All of these developments highlight the importance of expanding genetic testing for Parkinson's disease. By addressing perceived barriers and providing practical information and resources, we hope to increase clinician comfort and confidence, allowing them to offer more PD genetic testing in their practices. We can provide tailored information specific to the patient by entering the realm of personalized medicine, which, as other specialties have done, may result in improvements in clinical practice, care, and outcomes. Expanding PD genetic testing, on the other hand, will necessitate the collaboration of a group of medical experts and key stakeholders, particularly genetic counselors, who are already experts at guiding patients through complex genetic information and, more importantly, in the context of their psychological states.


2019 ◽  
Vol 2019 ◽  
pp. 1-6
Author(s):  
Avram Fraint ◽  
Bichun Ouyang ◽  
Leonard Verhagen Metman ◽  
Carolyn Jones ◽  
Deborah A. Hall ◽  
...  

Objectives. As genetic testing is becoming more widely commercially available for Parkinson’s disease (PD) and may have implications regarding clinical outcomes for deep brain stimulation (DBS) and other therapies, we aimed to determine patient knowledge and attitudes towards genetic testing. Methods. A sample of 88 PD subjects with bilateral STN-DBS completed a Genetic Attitudes Questionnaire (GAQ). Knowledge and attitudes towards genetic testing were assessed. Results. The mean percent of correct responses regarding genetic testing knowledge was 58.5%. Nearly 90% of subjects were unfamiliar with Genetic Information Nondiscrimination Act (GINA). The most important reasons subjects cited in deciding whether to undergo genetic testing included (1) to be a candidate for clinical trials if positive, (2) to learn that they do not carry a mutation, and (3) because a healthcare provider had recommended it. Individuals who influence decision-making include spouses and children. About 88% of subjects would share results with spouses, children, and siblings. Discussion. These results reveal that there is a major knowledge gap regarding genetic testing in PD and the implications of testing results on treatment, work, insurance, and privacy. Also, subjects would mainly seek genetic testing to participate in clinical trials, with spouses and children being the key stakeholders in decision-making.


2013 ◽  
Vol 5 (2) ◽  
pp. 167-177 ◽  
Author(s):  
Tracey M Scuffham ◽  
Aideen McInerny-Leo ◽  
Shu-Kay Ng ◽  
George Mellick

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