About Patient Voice Analysis
What’s this study all about?
PatientsLikeMe has teamed up with the non-profit research organization Sage Bionetworks for a new study called the Patient Voice Analysis (PVA). The study will bring together two research tools that could best capture your experiences with Parkinson’s disease (PD): the PatientsLikeMe PD Rating Scale (PDRS) and Max Little’s voice analysis technology. Collecting your PDRS and your voice at the same time could help measure PD severity, its progression and your response to treatments over time. You’ll easily find both the PDRS and the voice analysis phone number on the PatientsLikeMe site.
To keep your information private, we’ll attach a random reference number to your PDRS and voice recordings. We will then send your de-identified PDRS scores and your voice recordings to be analyzed by a larger community of researchers on a platform called Synapse. Synapse is a lot like PatientsLikeMe, but for researchers instead of patients. It’s a platform where teams of researchers from around the world can work together to analyze your de-identified experiences and accelerate learning about PD.
How long will it take?
Participating in this study should take you less than 10 minutes.
Will any of my personal information be shared?
We will not share personally identifiable information like your name or email address.
Who will have access to my de-identified records?
The partners for this project, PatientsLikeMe and Sage Bionetworks, along with the researchers on the Synapse platform will have access.
Can someone recognize my voice recording?
Theoretically, yes this is possible. However, we believe it is highly unlikely because it would be difficult to recognize you from the brief recordings in this study.
How old do I have to be to contribute?
You need to be at least 18 years old to participate.
Do I need to be diagnosed with Parkinson’s?
Yes. Right now, the PVA study is just focused on PD. However, once this research is done, we hope to expand it to other conditions.
How many times can I participate?
As many times as you want! In fact, the more times you fill out your PDRS and call the phone number the better.
What do I do with the reference number?
At the end of the call you’ll be given a reference number to write down. Please enter that number on PatientsLikeMe. There’s a place to enter it right where you found the directions to make the phone call.
Will I receive feedback on the project?
Yes, we always share our research back with the community. But please know that any feedback will be for research purposes only and should not be viewed as clinical advice. Before you alter any treatment regimen we recommend that you talk with your primary care provider or neurologist.
What if I want to fill out my Parkinson’s Disease Rating Scale, but not call the phone number?
That’s no problem. You can absolutely fill out your PDRS and not call the phone number. All your PDRS information will still be saved on your PatientsLikeMe profile and will continue to help other members living with PD learn more.
What if I decide that I want to cancel my participation?
Any of your previous submissions to the PVA study can still be used in the research. Each time you complete your PDRS you will continue to see prompts asking you to add your voice to the PVA study, but your participation is completely voluntary. Please continue to share as much as you are comfortable with.
Who should I contact if I have questions?
Don’t hesitate to reach out to firstname.lastname@example.org if you have questions about the study. If you have questions regarding your rights as a participant, please contact the Western Institutional Review Board (WIRB) at 1-800-562-4789
How is the PVA study different from Max Little’s Parkinson’s Voice Initiative?
Max Little’s Parkinson’s Voice Initiative (PVI) was focused on pinpointing PD from the sound of a person’s voice. Now, by combining Max Little’s voice analysis technology with your PatientsLikeMe PDRS score, the PVA study can go a step further by measuring PD severity, progression and response to treatments over time. Also, the Synapse platform will make the de-identified data available to a larger community of researchers who can work together to improve our knowledge about PD.
More About PatientsLikeMe
What is PatientsLikeMe?
We’re a free patient network where people can connect with each other to better understand their diseases, share condition and treatment information, and get the support they need to improve their health. We’re also a real-time research platform. As patients report on their disease experiences, they provide real-world insight into disease. Those insights are shared with companies, government organizations and others who use them to continuously develop more effective products, services and care.
Is sharing data on PatientsLikeMe safe?
When sharing information online about your health or a specific condition, you should know there is always a risk that someone could use this information against you. For example, medical and life insurance companies have clauses that exclude pre-existing conditions or employers may not want to employ someone with a high-cost or high-risk disease. We know these risks are real.
As for sharing health information, we believe the more health information you share, the closer we get to improving our health system and advancing the knowledge of your conditions. So, all we can ask is that you participate as fully as you feel comfortable doing.
How does PatientsLikeMe make money?
We take the information patients share about their experience with diseases and sell it to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance or medical services. This is, in fact, the only way we make money. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. They support our “not-just-for-profit” business model because it can accelerate research like never before.
For more information about PatientsLikeMe, please see our FAQs and Openness Philosophy.