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Yes, @A MyParkinsonsTeam Member, anyone with a Parkinson's diagnosis can participate by contacting the Parkinson's Foundation directly. I thought that that I had posted the link, but I don't know where to find it now.
Hi @A MyParkinsonsTeam Member, the Parkinson's Foundation contacted me, probably because I had filled something out somewhere along my journey, saying that I might be willing to participate in a clinical study. The person who called me, explained that they were wanting to study the genetics of those who had been diagnosed with Parkinson's and asked if I could come to KU Medical Center? I told her that I would very much want to be in that study and that I actually had an appointment coming up with my neurologist at KU Medical Center. My neurologist's office confirmed my diagnosis, I informed my doctor at the end of my appointment that the Parkinson's Foundation wanted to meet me after my appointment with her for a blood test. She also wanted some blood work done and directed me to the lab where they were waiting. Everyone got the amount of blood they needed for whatever tests, and I was on my way home.
I later got notice from the Parkinson's Foundation that I did not have the specific genes they were looking for, but I could offer to participate in the next set in which, I understand that they will be looking for a new set of genes. I am not certain if I am already signed up for the next one or not.
My response is probably not all that you were hoping for, I am sorry to say, but it's all I have for the moment.
Thanks, great detailed information that I already knew. I contacted the foundation as my attempt to get the home test kit online failed after 1st answering a few screening questions. Then it abruptly stated the mail order kit program was suspended? Dianna on the foundation helpline was great and said it might be up in a few months. She gave me the name and # of the local woman, Amanda Fessenden Coordinator of the PD Generation Test program at UF Gainesville, Fl. They are authorized to give the test and needed counseling and I will go there. It takes 3 months to reach the counseling point. People who request the test must already have Parkinsons. How to prove that, Dianna didn't know? I already have it so why the counseling? Gee Remrod sorry to say you have Parkinsons and have some genes that maybe passed on to offspring. At 71 knowing I have Parkinsons and not planning on having children its a waste of time and tax dollars. When the Neurologist first told me after the DaTscan. "Sir you have Parkinsons" thats when counseling might have helped. He stated that like when an ASE certified auto technician tells me, yes your tire us flat.
Left UF two messages so far. Their voicemail only had the generic answer that came with the system that the party wasn't available. No name or department mentioned in the canned responce.
I am looking to hear from a person who actually went through the arduous process already. Sorry if I am wrong, but my feeling is your an AI response. Please answer me back to prove your not. Thanks.
Remrod.
Yes, PD GENEration is a legitimate international research study sponsored by the Parkinson’s Foundation. It offers genetic testing and genetic counseling at no cost to people who have been diagnosed with Parkinson’s disease.
You may enroll online and complete an at-home blood-collection kit, or participate through one of the study’s clinical locations. Participants receive their individual results and meet with a genetic counselor who can explain what those results may mean for them and their families.
The test looks for genetic variants associated with Parkinson’s. According to the Parkinson’s Foundation, about 13% of the more than 35,000 participants tested have had a Parkinson’s-related genetic variant. Finding one may help explain part of a person’s risk and could make that person eligible for certain gene-focused clinical trials.
However, the test cannot tell exactly why every person developed Parkinson’s, predict how quickly the disease will progress, or determine which symptoms they will experience. A negative result does not prove that genetics played no role because researchers are still discovering genes connected with Parkinson’s. A positive result also does not mean that a person’s children or other relatives will definitely develop the disease. Different variants carry different levels of risk, which is why the included genetic counseling is so important.
Before enrolling, it would be reasonable to discuss the study with your neurologist and think about whether you are comfortable learning information that may also have implications for relatives. You should also read the consent and privacy information carefully so you understand how your sample and genetic data will be stored and used for research.
The results may not change your current Parkinson’s treatment, but they could provide useful information, identify possible clinical-trial opportunities, and help researchers develop more individualized treatments in the future.
You can learn more or enroll through the [Parkinson’s Foundation PD GENEration program](https://www.parkinson.org/advancing-research/ou...). You may also call the Parkinson’s Foundation Helpline at **1-800-473-4636** with questions.
PDGeneration is a great initiative from the Parkinson's Foundation! It offers free genetic testing and counseling to people with Parkinson's, helping to identify gene mutations that may be linked to the condition.
Here's what to generally expect from the process:
- Request a kit to test from home or visit a participating Show Full Answer
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