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Fox Foundation, 23andMe in Large-Scale Parkinson’s Study

DNA collection kit

23andMe DNA collection kit (23andMe Inc.)

30 October 2017. The Michael J. Fox Foundation and personal genetics company 23andMe are recruiting a large group of individuals with and without Parkinson’s disease to provide a more complete picture of the disorder. The Fox Insight study is supported by the Fox Foundation, with contributions totaling $6 million so far.

Parkinson’s disease occurs when the brain produces less of the substance dopamine, a neurotransmitter that sends signals from one neuron or nerve cell to another. As the level of dopamine lowers, people with Parkinson’s disease become less able to control their bodily movements and emotions. Symptoms include tremors, i.e. shaking, slowness and rigidity in movements, loss of facial expression, decreased ability to control blinking and swallowing, and in some cases, depression and anxiety. According to Parkinson’s Disease Foundation, some 60,000 new cases of Parkinson’s disease are diagnosed in the U.S. each year, with more than 10 million people worldwide living with the disease.

The study aims to provide medical researchers data for Parkinson’s disease treatments, but also regulatory officials, insurance professionals, and policy makers to help guide their decisions affecting individuals with the condition. The data collected include genetics from volunteers with the disease and a comparison group of people without the disorder. But the study is also gathering the experiences of people with the disease, provided by online questionnaires every 3 months that can be captured on mobile devices.

The Fox Insight study aims to recruit tens of thousands of people to take part, with 7,392 providing data as of 30 October. 23andMe says from 2009 to 2017, 12,000 of its customers volunteered their genetics and corresponding physiological data for an earlier study of Parkinson’s disease. The new study expects to enroll a more diverse population that would otherwise not take part due to mobility challenges or geographic distance. Beginning in 2018, data from the collection will be de-identified and made available to scientists studying Parkinson’s disease.

Both the Fox Foundation and the company expect Fox Insight will help better understand underlying disease processes, identify new therapy targets, and highlight differences in symptoms and the course of the disease if a particular mutation is present. The results are expected to be used for drug development and to help determine health care priorities.

“What I find really fascinating when I talk to Parkinson’s patients is that we all have a different disease,” says actor Michael J. Fox, who started the foundation in the year 2000 after being diagnosed with the disease. “One of our foundation’s most important goals has been finding a way to incorporate patient involvement and patient knowledge and wisdom and enthusiasm in research. Capturing the natural back-and-forth between patients really helps doctors and researchers.”

Funding provided by the foundation will be used in part to offset the costs of genetic testing for people with Parkinson’s disease, who can take part in Fox Insight at no cost.

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