New Parkinson’s Genetics Engine to Enhance Research Through Shared Data

Though documented as long ago as the early 1800s, medical breakthroughs in Parkinson’s disease research have been slow in coming.  That’s why PatientsLikeMe continues to get involved in the research process.  With our new genetics engine for Parkinson’s disease, patients now have a way to share information about their genetics and find others with the same genetics as them.  As part of our commitment to supporting genetics discovery, PatientsLikeMe recently partnered with 23andMe, aiding them in their research effort to get 10,000 Parkinson’s patients for a groundbreaking research study.

parkinson's geneticsMost of the time, people don’t know what causes their Parkinson’s disease.  It could be due to genetic factors we haven’t identified yet, environmental exposures, or maybe even something else completely.  However, there are some known genetic causes of Parkinson’s disease. Sometimes different genetic mutations have different disease characteristics, so there’s some benefit to knowing what mutation you may have.  For example, different genetic mutations can result in an earlier or later onset for Parkinson’s disease, some have a milder or more severe disease course, and others have a higher or lower chance of dementia.  Knowing your genetic status could help you plan ahead, especially if you have a strong family history of the disease.

The 23andMe kit tests for one genetic mutation that can cause Parkinson’s disease – LRRK2 G2019S.  The chances of having this mutation vary with your ethnicity, and not everyone with the mutation will get Parkinson’s disease. However, some studies claim that LRRK2 G2019S is responsible for about 5-6% of all familial cases of Parkinson’s Disease and 1% of sporadic (randomly occurring) cases of Parkinson’s disease.

We are working to include as much meaningful genetics information in the PatientsLikeMe Parkinson’s community so that you can make the best decisions collaboratively. For those PatiensLikeMe Parkinson’s community members taking advantage of the 23andMe offer, we encourage you to upload your genetic information on your PatientsLikeMe profile so we can continue to expand our understanding of genetics and Parkinson’s in the context of individual patients.  If you go to your 23andMe account and find that you have the LRRK2 G2019S mutation, you can add it to your PatientsLikeMe diagnosis history.  Once you have entered your genetics to your profile, you will be “findable” by other “patients like you” with the same genetics. The PatientsLikeMe research team is excited about learning more about Parkinson’s with your help. Sharing information will help us all learn as much as we can about the disease.

PatientsLikeMe member cbrownstein

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4 thoughts on “New Parkinson’s Genetics Engine to Enhance Research Through Shared Data”

  1. Sadie Cherubino

    How do we find out about our mutation nnumbers and what does it mean? Also what is drug induced Parkinsons and vascular parkinsons? My daughter just informed me that she feels she is at high risk for Parkinsons because of he r having adhesive capsulitis, what is this about. Please respond to this. Thank you Sadie Cherubino

    1. Dear Ms. Cherubino,

      Thank you for your comment. You can find out your mutation through your medical provider, who may refer you to a Genetic Counselor for the test and interpretation of the results. Unfortunately, we are unable to provide medical advice, but he or she should be able to answer your questions about Parkinson’s Disease and adhesive capsulitis.
      Best wishes,
      Catherine Brownstein MPH, PhD

  2. My paternal grandfather had late on set parkinson’s my grandfather died at 69. I am not sure as to the type or the extend of the disease however it was back in the late 60’s when he was diagonses and was told there was not help for him as he was in the advanced stages at that time. My father was showing signs of dementia years before his death 69 years old. How do my siblings and myself get tested we are in our late 50’s and early 60’s? What test do we need to request and from what type of doctor? I have not heard of any research in to linking Parkinson’s and Epilepsy as my son has epilepsy that is not controlled since the age of 5 years old. I search continuelly for answers and guideance.

    1. Dear Pat,
      Thanks for writing. Unfortunately we are not able to provide medical advice, but your medical provider should be able to recommend a plan for you and your siblings to get tested for Parkinson’s and dementia.

      I did a search on Pubmed, and found an article that concluded that Parkinson’s disease appeared more frequently in people with Epilepsy (Gaitatzis et al., 2004); however, a co-morbidity study found that Epilepsy is *less* likely in individuals with Parkinsonism, especially Parkinson’s disease (Bodenmann et al., 2001). Interestingly, another paper noted a reduction in seizure frequency with the development of parkinsonian symptoms (Vercueil, 2000).

      I have heard of “Parkinson’s Plus” syndromes being associated with seizures in patients (Nygaard et al., 1989), though it is not clear whether the seizures are epileptic, or just associated with the progression of the disease.

      I guess it is safe to say the jury is still out on this one.

      Hope this helps a bit. If you have more questions, please feel free to email me!
      Catherine Brownstein MPH, PhD

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