Thank you for your interest in serving on an MDS Task Force. MDS prides itself in having a strong foundation of dedicated volunteers who serve on many committees, task forces, special interest groups, and more.
The assistance of our members, who work tirelessly to help further the Society's mission, enables MDS to educate and inform others around the world about the latest news, research, and advances in movement disorders.
Members of Task Forces are responsible for collaborating to meet assigned goals and objectives. Members will participate in conference calls throughout the year and in-person meetings convened during the annual International Congress.
Task Force on Genetic Testing in Parkinson’s Disease
The MDS Officers have provided provisional approval for a Task Force on Genetic Testing in Parkinson’s Disease and now ask for MDS members in good standing to submit their interest in serving on the Task Force. This Task Force will be chaired by Christine Klein and Rachel Saunders-Pullman.
Background: With advances in molecular genetics, it is both easier and less expensive to determine genetic etiologies of disease. While diagnosis of Parkinson disease does not hinge on genetics, knowledge of gene carrier status may inform counseling patients on expected rate of progression, risk of cognitive impairment, selection of therapeutics (PARK2 and GBA are both examples), and may be desired by the patient. Further, there is rapid development of experimental therapeutics targeting specific PD genetic mutations (LRRK2 and GBA). A number of such therapeutics are or soon to enter stage of clinical trials. Up until now, the general state of practice was not to offer clinical genetic testing as it would not change patient management; however, patients’ right to self-determination as well as potentially actionable results, including through enrollment in clinical trials, raise the urgency to describe the landscape and develop testing consensus and recommendations.
Depending on the region and frequency of PD genes in a population, genotyping for PD may be largely restricted to research protocols. Further, it is not governed by any universal policy or recommendations and may not be not covered by insurances. As testing options expand, and gene specific trials increase demand for testing, movement disorders clinicians may not be fully prepared to offer counseling and testing. Currently very few patients with PD are aware of their genetic status. A number of stakeholders (industry, patient advocacy organizations) are and will be offering either free or discounted targeted genetic testing to PD patient community. All these recent changes in the field require critical review of the current status and consensus building on the policies and recommendations for PD clinical genetic testing and counseling.
Objective: To convene a panel of international experts to review the current state of the field in Parkinson’s disease clinical genetic testing, examine the ethical considerations important to genetic testing in Parkinson’s disease, and propose recommendations to be published in the Movement Disorders journal.