You Could Change the Future of IBD.

Join 10,000 participants with Inflammatory Bowel Disease.

Genetics and IBD.

At 23andMe, we believe genetic data plays a critical role in research. Knowing more about how genetics relate to a disease can provide additional information on how people might respond to treatments, which may eventually lead to a cure.

Today, there are very few medications for Inflammatory Bowel Disease (IBD), a chronic, inflammatory disease of the gastrointestinal tract (the two main diseases of IBD are Ulcerative colitis and Crohn's disease). Maintaining the quality of daily life can be a challenge. It is not known which medications will be effective on individuals and some IBD medications stop working over time. There is very little those diagnosed with IBD can do and often times, surgery becomes the only solution available.

We believe DNA may play a critical role in IBD treatment. Genetics has started playing a larger role in medicine over the past few years. And genetics could provide insight as to why some people are more likely to get IBD and why people respond differently to treatment options and drugs.

Our goal.

To find a better way to treat IBD through genetics. By partnering with Pfizer (a manufacturer developing new drugs to treat IBD) on this first study, we will work together to learn how your genes and your environment could play a role in IBD drug treatment, and how they relate to IBD risk and progression.

Our research objective is to understand the genetic associations found between IBD patients' DNA and their disease, and apply this understanding to Pfizer's drug development efforts.

Join our IBD study today.
enroll now
Questions? Email us at:
ibd-help@23andme.com
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What makes us different.

You can participate without leaving your home. Your participation takes fifteen minutes. And your participation is anonymous.

Traditional research studies may involve out-of-home blood tests, visits to clinics, nurse practitioner calls, local research facility visits and even drug trials. And, if you don't live close to a research facility, you may not even have the opportunity to participate. Geography alone can slow down research and ultimately, better treatment.

23andMe believes everyone who wants to participate in research should be able to participate in research.

Participate without leaving your home and, it takes just fifteen minutes.

With this study you complete a 15-minute online survey and provide a saliva sample.

And finally, what also makes us different is your ability to participate in future IBD studies around the world. Your information will go into more IBD studies after our first partnership with Pfizer. We believe researchers and scientists around the world should have access to information, which can lead to, and accelerate, better treatment.

Your participation.

If you are eligible to participate, we will send you a 23andMe DNA-saliva kit at no cost. We will ask you to answer a short online survey (15 minutes) about your personal IBD journey, symptoms, response to treatments, etc. Your privacy is important to us and participation is anonymous.

Participation is Anonymous

Benefits for participants.

If you are not already a 23andMe customer:

If you are an existing 23andMe customer:

  • You will receive a $20 Amazon gift card for completing the study steps and agreeing to the terms.

Our promise to you.

We promise quarterly updates on our recruiting progress and promise to answer questions you may have throughout the study. As we grow our participant base and analyze the data, there may be additional opportunities to participate in surveys. If you would like to continue your participation, you will have the opportunity to provide ongoing contributions. We will communicate any additional survey opportunities in the quarterly updates and in your 23andMe.com profile dashboard.

We believe your genetic data can be used for good.

We believe Pfizer has access to great scientists and physicians in this field. They have a lot of experience in developing drugs to help people.

No one can promise a cure or a treatment, but we promise to be transparent in our research efforts and to empower other researchers and scientists with IBD 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.

IBD is a group of inflammatory conditions of the colon and small intestine. People who have been diagnosed with Crohn's disease or ulcerative colitis are eligible for this study.

In order to participate in the first study within the IBD community, you must meet all of the following criteria:

  1. You've been diagnosed with Crohn's disease or ulcerative colitis by a qualified physician.
  2. You're willing to submit a saliva sample for DNA testing and complete online surveys related to your condition.
  3. You have access to the internet.
  4. You are at least 6 years old (minors under 18 require parental consent to enroll).

Our scientific advisors.

We believe IBD experts from around the world can help play a critical role in our IBD research community.

We've selected five advisors with a range of IBD expertise globally. They are not part of 23andMe or Pfizer (or any other study partner). They are experts in the IBD field and their experience can range from seeing patients to being a part of cutting edge research. They assist us with survey development, data analysis and help guide our research so our goals are unbiased, not self-serving.

One of our research advisors, Dr. Smarr, suffers from IBD which fuels his drive to search for a better treatment.

FAQ and other resources.

Participation


What is the 23andMe IBD study?

It is a 23andMe research study focused on IBD. The goal of this study is to answer two main questions:

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

Currently, the cause of IBD 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 IBD to come together to provide valuable information for research, including 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 IBD study?

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 ibd-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 IBD 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 an initial 15-minute online survey about your experience with IBD. Surveys will include questions about your diagnosis, treatment, symptoms, medications and family history. We may send reminders and call you if you haven't finished all the survey.

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

  1. Why do people get IBD? Are there genetic factors that contribute to the cause and severity of IBD?
  2. How should people be with IBD 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 IBD. This comparison will allow us to see if certain genetic factors are linked to specific features of IBD.

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 all identifying components (name, email, address, user ID and password). You will be anonymous to Pfizer, a company who is sponsoring this study, and other research partners in the future.

What are the risks of being a research participants?

  • 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 patients with IBD
  • 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 yourself through genetics.

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 one online survey, which takes 15 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®
  • Take a direct role in research that may benefit you and other patients with IBD
  • Participate in web-based research from the comfort of your own home
  • Be kept informed quarterly on study progress

Will my 23andMe account be different from other 23andMe customers' accounts?

As a participant in the IBD Research Initiative, you will receive the 23andMe Personal Genome Service® DNA test kit which gives you access to valuable information on ancestry and uninterpreted genetic data. You will also receive updates on project-related discoveries.

Your 23andMe profile will not be eligible to create a Community nickname at this time. A Community nickname is required to post, reply to, or follow threads or to join Community groups.

Participants who purchased a Personal Genome Service DNA test kit and created a 23andMe account prior to joining the IBD Research Initiative will lose access to the Community forums.

To learn more about this restriction please email ibd-help@23andme.com.


Will I have access to the community forums?

Upon enrolling in the IBD Research Initiative, participants agree to lose access to the community forum.

Participants who purchased a Personal Genome Service DNA test kit and created a 23andMe account prior to joining the IBD Research Initiative will lose access to the community forums. This means that once a participant enrolls and is accepted into the study, they will no longer be able to post on the community forums.


Who can I contact if I have more questions about the IBD study?

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


Compensation


Are existing customers compensated for their participation in the study?

Existing customers are customers who purchased a kit prior to joining the study and were genotyped on the 23andMe’s V3 or V4 platform (these genotyping platforms have been in use since 2010).

Existing customers are offered $20 for completing the background survey and agreeing to the terms. Compensation will be sent to participants via email and provided in the form of an Amazon gift card.

Customers genotyped before 2010 on older platforms are not eligible for compensation and will be considered new customers.


Are new customers compensated for their participation in the study?

New customers will receive the Personal Genome Service DNA test kit and related services at no cost to participate in the study. This includes customers who did not purchase a DNA test kit from 23andMe prior to joining the study, as well as customers who were genotyped before 2010 on older 23andMe platforms.


Are there other opportunities to receive compensation?

Yes, study participants who have completed the initial background survey are eligible to receive compensation for completion of some follow-up surveys. Additional information regarding follow-up survey participation can be found here. If compensation is offered for additional surveys, you will be informed when you are invited to take the survey. Compensation is provided in the form of an Amazon gift card.


Who can I contact if I have not received compensation?

Please email ibd-help@23andme.com if you have not received your compensation at the end of the study.


Research


Why is this study helpful to IBD research?

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

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

What does it mean for Pfizer to sponsor this study?

We are working closely with Pfizer medical experts to ensure that the right research questions are being asked and with the patient advocacy community to ensure that patients' best interests are first and foremost.

If a commercial product is developed from this research, rights to the commercial product will belong to 23andMe and/or Pfizer and their collaborators (persons or companies partnering with Pfizer). You and your family will not receive any financial benefits or compensation from or have any rights in any developments, inventions or other discoveries that might come out of this research.


Will there be more opportunities to contribute to IBD research?

Our first IBD study with Pfizer includes an initial 15-minute survey for all participants to take after enrollment. 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 surveys to enhance the research.

We will communicate any additional survey opportunities in the quarterly updates and in your 23andMe.com profile dashboard.


23andMe Personal Genome Service® DNA Test


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 your uninterpreted genetic data and information about your ancestry. Reports and features available under your 23andMe account are updated on an ongoing basis as research uncovers new ways in which genetics relates to ancestry.


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

Your account will continue to receive ancestry 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


Who owns my DNA profile?

You own your genetic data. You will be participating in this research at your own discretion, answering surveys as you wish. You can also withdraw at any time. However, your saliva sample, once submitted to and analyzed by 23andMe, is processed in an irreversible manner and cannot be returned to you. Please refer to our Privacy Statement to learn more about our practices.


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, such as Pfizer. This means you are anonymous to Pfizer and anyone else we partner with in the future (global researchers, global scientists, etc).

The shared data will be stripped of all 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 Pfizer 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.


Before you enroll, we recommend reading the below resources:

enroll now

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If you are shipping to England, Scotland or Wales continue to the: UK site →


If you are shipping to Ireland visit the: EU site →


Our EU product is in English only, and due to applicable regulations it is only available for customers with a shipping address in Denmark, Finland, Ireland, Sweden and the Netherlands. If you are shipping to one of these countries continue to the: EU site →

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