Australians With Parkinson’s Asked to Take Part in Large Genetics Study

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by Steve Bryson PhD |

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The QIMR Berghofer Medical Research Institute has launched the Australian Parkinson’s Genetics Study (APGS), a large-scale research endeavor to identify genetic factors that influence the risk of developing Parkinson’s disease.

APGS aims to enroll 10,000 Australian residents, men or women ages 30 and older, who have been diagnosed with and are being treated for Parkinson’s. Participants will need to complete an online, or paper, questionnaire and to provide a saliva sample for DNA extraction through a collection kit sent to their home once registered.

The kit includes a pre-paid package for returning the saliva through the post.

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“Medical breakthroughs often require years of dedicated research and tend to rely strongly on the availability of accurate, real-patient data. The APGS has the potential to do this if we have the participants,” Nick Martin, PhD, a lead researcher with QIMR Berghofer, said in a press release. “It’s easy to participate from the comfort of your own home, and only requires around 25 minutes of your time through the donation of a saliva sample and completion of a questionnaire.

“If you’re eligible, we encourage you to join,” Martin added.

Study participation and the storage of genetic information are strictly confidential. Those wishing more information or needing a paper questionnaire can call 1-800-257-179 or send an email request to [email protected].

More information is also available through this fact sheet.

Both genetic and environmental factors are thought to influence the risk of Parkinson’s, a progressive neurodegenerative disorder primarily characterized by movement-related symptoms, but one that can also cause changes in cognition, mood, and sleep.

Although some genes are strongly associated with Parkinson’s, most cases occur in people with no apparent family history — only about 15–25% of patients have a known relative with the disease.

The APGS hopes to identify hundreds of genetic variants that underlie the risk of developing the disorder. A better understanding of how genes are involved in disease processes will support future research into the causes of Parkinson’s, and aid the development of more effective, and more personalized, therapies to prevent, slow or stop Parkinson’s, with a goal of curing it.

The project is supported by funding from the Shake It Up Australia Foundation and its partner, The Michael J. Fox Foundation. Both nonprofits promote and fund Parkinson’s research, and advocate for patients and their families.

“With so much to discover about the disease and its progression, this opens us up to so many possibilities. We are truly on the edge of a potential medical breakthrough in our lifetime, which could change the face of the disease,” said Clyde Campbell, a Parkinson’s patient and CEO of Shake It Up.

“To make that possible though, we need those living with Parkinson’s to sign up so we can understand its complexities. Let’s crack this genetic code so we can make a difference to what living with Parkinson’s looks like in the future,” Campbell added.

APGS data will contribute to the Global Parkinson’s Genetics Program, a study involving more than 150,000 volunteers worldwide to further understand the genetic risk factors of Parkinson’s disease.