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Thank you to all community members who enrolled in the 23andMe Parkinson's research initiative.

Enrollment is complete but our search for a cure continues. Read more about the future of Parkinson's research at 23andMe and how you can participate.

Genetics and Parkinson's

Inside us all, there's the power to understand disease through our genetics.

At 23andMe, we believe genetic data can play a critical role in Parkinson's disease (PD) research. We have the largest Parkinson's community for genetic research in the world. Why? Because understanding more about how our genetics influence our disease should improve diagnosis and treatment, and may eventually lead to a cure.

In the United States alone, 50,000 to 60,000 new cases of Parkinson's disease are diagnosed each year - affecting 1 in 100 people over the age of 60. And an estimated 4 to 6 million people have been diagnosed with Parkinson's worldwide.

Our Parkinson's community of over 11,000 participants (and growing) seeks to achieve breakthroughs in this disease. We want more answers. We want to know more. We want to contribute to research to better understand the impact our genetics have on this disease. One of our biggest accomplishments to date was the discovery of two new genes associated with Parkinson's.

How people like you have made an impact.

2011

23andMe found two new genetic associations with Parkinson's, providing new evidence that there is a substantial genetic component still to be discovered for PD.

2012

We contributed to a new database that created the most comprehensive synopsis of Parkinson's disease genetic research to date.

2013

We contributed to a study whose preliminary findings suggest that increased iron levels are associated with a decreased risk of PD.

2014

Working as part of a broader research group, 23andMe identified six new genetic regions that had not previously been associated with Parkinson's disease.

Together, we can make an even bigger impact on Parkinson's research.

Our goal.

To disrupt and accelerate the way Parkinson's disease is studied by understanding the underlying genetics of the disease. Our research objective is to understand the genetic associations found between Parkinson's patients' DNA and their disease, and apply this understanding to a search for a cure.

Powerful Stories

Claudia was diagnosed with Parkinson's Disease in 2010. She joined 23andMe's PD research community in 2012. In this video, Claudia talks about how PD impacts her life, her family and how she hopes 23andMe's research will help the PD community.

Muhammad Ali, the world's greatest champion, fought alongside thousands of others who are part of the 23andMe Parkinson's research community.

Want to stay in touch about future PD research opportunities?

Email us at
pd-help@23andme.com

What makes us different.

You can participate in this research initiative without leaving home. You simply provide a small sample of saliva and complete several online surveys ranging from 15-20 minutes each.

Enroll in community
Provide saliva sample at home
Take online surveys
23andMe and partners conduct analyses
Help us make discoveries

Participate without leaving home.

We break down geographic barriers to research. Traditional research studies may involve out-of-home blood tests, visits to clinics and research facilities, follow up calls and even drug trials. And, if you don't live close to a facility, you may not even have the opportunity to participate.

Our Parkinson's community, with its growing number of active participants, is the world's largest genotyped PD cohort. Access to this resource and data is valuable to both academic and commercial research partners to help accelerate their research programs.

Your participation matters.

If you're eligible to participate, we will send you an in-home 23andMe® Personal Genome Service DNA kit at no cost. You provide a small saliva sample and send it back to our lab in the same pre-paid box it arrived in.

We will ask you to answer short online surveys (15 - 20 minutes each) about your Parkinson's journey and symptoms. Your privacy is important to us, so your data (your genetic information and survey responses) will never be tied to your personal information (your name, email, etc.). Your data will be de-identified.

Benefits for participants.

  • You can help advance medical research and contribute to the scientific understanding of Parkinson's disease.
  • If you are not already a 23andMe customer, you will receive access to the 23andMe Personal Genome Service® at no cost

Our promise to you.

We promise to send regular updates on our research efforts and findings, and notify you when there are opportunities for you to participate in new surveys or studies. If you would like to continue your participation, you will have the opportunity to provide ongoing contributions. We will let you know about these opportunities with emails and on your 23andMe Home page.

We can't promise a cure or new treatment, but we can promise to be transparent in our research efforts and to empower other researchers and scientists with Parkinson's genetic data in a time when resources and funding can be scarce.

We believe your genetic data can be used for good.

See if you're eligible.

Parkinson's disease is a chronic degenerative neurological disorder. People who have been diagnosed with PD are eligible for this study.

To become part of the Parkinson's research community, eligibility criteria are as follows:

  • You have been diagnosed with Parkinson's disease by a qualified physician
  • You are willing to submit a saliva sample for DNA testing and complete online surveys related to your condition.
  • You have access to the internet.
  • You are at least 18 years old.

Our Partners.

Together with key partners, the 23andMe Parkinson's research initiative has fueled research breakthroughs. This could not have been done without our growing community's commitment and strong partnerships that focus on bringing genetics to the forefront of this disease.

  • The Michael J. Fox Foundation

    The Michael J. Fox Foundation provides generous support throughout the Parkinson's Research Initiative. Currently, 23andMe is collaborating with The Michael J. Fox Foundation to search for blood-based biomarkers as part of an ongoing investigation of mutations in the LRRK2 gene.

  • Genentech

    23andMe and Genentech are collaborating on a study designed to analyze whole genome sequencing data for approximately 3,000 individuals selected from participants in the 23andMe Parkinson's Research Initiative and their first degree relatives. The goal of this study is to identify novel targets for Parkinson's disease therapies.

  • The Parkinson's Institute and Clinical Center

    23andMe and the Parkinson's Institute found two novel genetic associations with PD. This finding shows that a considerable proportion of the genetics of PD has yet to be explained while also confirming the importance of environmental factors.

The following partners have provided tremendous support to our research by helping us spread the word to interested individuals.

FAQ and other resources.

Participation

What is the 23andMe Parkinson's research initiative?

It is a 23andMe research study focused on Parkinson's disease (PD). The goal of this study is to answer two main questions:

  1. Why do people get PD? Are there genetic factors that contribute to the cause and severity of PD?
  2. How should people be treated? Do genes influence different responses to medications or other treatment?

Currently, the cause of PD is unknown, but previous research suggests that there is a strong genetic component involved. The 23andMe web-based platform enables a large group of individuals with PD to come together to provide valuable data for research. This research data includes genetic information (using DNA from saliva) and information about each participant's unique experiences with the disease (using responses from online surveys). Conducting research using this data may help improve diagnosis and find better treatments.

What does it mean to be a "research participant" in the Parkinson's research initiative?

It means that you will agree to contribute your information for research purposes. There are many aspects to being a research participant. We have summarized the most important ones below. If you have more questions, you can contact us at pd-help@23andme.com.

What will I be asked to do?
You will be asked to:

  1. Enroll and consent through the 23andMe website so you can contribute your genetic data and survey answers to the PD study.
  2. Respond to a short questionnaire to determine your eligibility to participate. This step is very important to ensure the integrity of the study.
  3. Provide a DNA sample (from your saliva) for genetic analysis. We will keep this saliva/DNA stored in our laboratory.
  4. Complete online surveys about your experience with PD and other health-related topics. Surveys will include questions about your diagnosis, treatment, symptoms, medications and family history. We will email you to let you know when to take these surveys, and may send reminders and call you if you haven't finished all the available surveys.

How will 23andMe use my data?
We will use your data to answer two main questions:

  1. Why do people get PD? Are there genetic factors that contribute to the cause and severity of PD?
  2. How should people with PD be treated? Do genes influence different responses to medications or other treatment?

We will compare your genetic data and your survey answers with the genetic data and survey answers of the other research participants with and without PD. This comparison will allow us to see if certain genetic factors are linked to specific features of PD.

As part of this study, 23andMe may share your de-identified, individual-level data with qualified research partners. This means that the data we share about you with researchers will be stripped of identifying components (name, email, address, user ID and password).

What are the risks of being a research participant?

  • Being a research participant means that 23andMe and our qualified research partners store your genetic information and survey answers. If a security breach occurred, your data could be leaked. Please refer to How do you protect the confidentiality of my data? for more information about this risk.
  • If you are not already a 23andMe customer, you may learn information about yourself that you do not anticipate (e.g., that you are not related to family member in the way you thought, or surprising facts related to your ancestry).
  • Please refer to our Terms of Service for more details about the risk of being genotyped.

What are the benefits of being a research participant?
This is a new opportunity to participate in genetics research. As a research participant, you will:

  • Take a direct role in research that may benefit you and other individuals with PD
  • Participate in web-based research from the comfort of your own home
  • Be kept informed of the discovery process as research advances
  • Have the option to learn more about your genetic ancestry

What do I need to do to participate?

  1. Enroll, provide consent and answer questions to determine your eligibility through the 23andMe website
  2. Provide a saliva sample and send it back in the prepaid postage box
  3. Complete online surveys (15-20 minutes)

What are the advantages of participating in this research?

23andMe provides a new opportunity to participate in genetics research. As a participant, you will:

  • Learn about yourself through the 23andMe® Personal Genome Service at no cost. You will receive personalized reports on your health, traits and ancestry.
  • Take a direct role in research that may benefit you and other individuals with PD
  • Participate in web-based research from the comfort of your own home
  • Be kept informed regularly on study progress

Who can I contact if I have more questions about the Parkinson's research initiative?

For questions regarding your eligibility to join this research initiative, saliva sample, the online surveys, or your account with 23andMe, please contact pd-help@23andme.com

Research

Why is this study helpful to PD research?

We believe that this study will enhance research for PD by:

  • Bringing together a large group of people who have PD to better understand how genes may influence age of diagnosis, disease progression, symptoms, and different responses to treatments.
  • Expanding the geographic reach of the study by enabling participation from home.
  • Removing some of the time and cost barriers that can slow progress in other types of studies.

How will my saliva sample be analyzed and stored?

By choosing to have 23andMe receive, analyze and store your saliva sample, you are consenting to having 23andMe and its contractors access, analyze and store your sample in a manner consistent with our Terms of Service, Privacy Statement, and Biobanking Consent Document (available under your account settings).

We use a process called "genotyping" to generate genetic data from each participant's saliva. Genotyping is a process which determines which genetic variants an individual possesses at specific positions in their genome. We may perform additional analyses, including sequencing, which examines every position in either a portion or all of an individual's genome

Will there be more opportunities to contribute to PD research?

Our PD study includes online surveys about your experience with PD and other health-related topics. As more people join the study and our research scientists start to look at the data, there may be an opportunity to participate in additional studies or surveys to enhance the research.

If there are any additional study or survey opportunities, we will let you know about them via regular updates, through your 23andMe Home page and/or email.

23andMe® Personal Genome Service

What is the 23andMe® Personal Genome Service?

As part of your participation in this research study, you will receive complimentary access to 23andMe's® Personal Genome Service DNA test kit and related services (PGS). PGS provides you with your unique personal genetic profile, including reports on your health, traits and ancestry.

For how long will I have access to my account with 23andMe?

Your account will continue to receive updates as long as the genetic information referenced in those updates is among the data generated by your original DNA sample. If a future feature or report relies on DNA results not included in your initial analysis, access to that feature or report would require upgrading to the next platform. Any future upgrades beyond the current technology are not included as a benefit to participation.

Security and Data Sharing

Will you share my genetic data with third parties?

To increase the chance that meaningful scientific discoveries about your condition are made, 23andMe may share your de-identified, individual-level data with qualified research partners.

The shared data will be stripped of identifying components (name, email, address, user ID and password). If 23andMe shares your genetic or self-reported data with a qualified research partner, this action cannot be undone and your data will not be returned to 23andMe. Please refer to our Privacy Statement to learn more about our practices.

How do you protect the confidentiality of my data?

23andMe may share only your de-identified, individual-level data with qualified research partners. This means you are anonymous to all of our current research partners and anyone else we partner with in future (global researchers, global scientists, etc.).

We built all of our systems to maximize protections of individual level data and we have a number of safeguards in place to ensure confidentiality. All data in the research computing environment are disconnected from your contact or identifying information and are coded with a unique research ID.

23andMe research scientists who have access to your sensitive data (i.e. DNA results, survey responses) do not have access to your account or contact information. Conversely, 23andMe project managers who have access to your contact information do not have access to your sensitive individual-level data. Thus, it would be extremely difficult for 23andMe employees or any external party to link your individually identifying information to your DNA results and survey response data.

A 100% guarantee in the field of information security does not exist since there are always unknown threats. However, we constantly update our security systems and protocols to deal with new threats, as they become known. We can protect against known factors by applying the best practices developed by the information security community to protect your data.

All 23andMe research is performed in a secure computing environment with access restricted to research scientists and system administrators. All 23andMe servers are protected by technical, physical, and administrative procedures. Our servers are monitored for unauthorized activity. Your genetic data and sensitive account information such as passwords are encrypted, as are all data transfers between our servers and your computer(s).

23andMe will also have agreements with all research partners regarding the security and storage of de-identified, individual-level data that is shared outside 23andMe. Although 23andMe cannot provide a 100% guarantee that your data will be safe, 23andMe policies and procedures minimize the chance that a breach could take place.

I joined the 23andMe Parkinson's research initiative before 20 May 2015. How can my data be shared?

All existing PD participants have consented to participate in research under the main 23andMe Research consent, which allows 23andMe to share de-identified, aggregate (not individual) data with external research partners and in scientific publications. These data will be summarized across enough customers to minimize the chance that personal information will be exposed.

Some PD participants have agreed to an additional consent, which allows 23andMe to share de-identified, individual-level data. PD participants who have not yet agreed to the individual level consent can review and agree to this document from within their 23andMe account.

Research participants who enrolled before 20 May 2015 are not required to consent to share de-identified, individual-level data with qualified research partners in order to participate in this study.

You can review and change your consents in the Settings page within your 23andMe account.

Before you enroll, we recommend exploring these resources:

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