Cartoon image of a butterfly

Thank you to all community members who made this IBD research possible.

Enrollment for this current IBD study is now closed. We are busy analyzing data to better understand genetics and IBD. Stay tuned for updates on our findings.

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.

Want to stay in touch about future IBD research opportunities?

Email us at
ibd-help@23andme.com

What makes us different.

You can participate without leaving your home. Your participation takes 15 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 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 updates and on your 23andMe.com Home page.

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:

  • You've been diagnosed with Crohn's disease or ulcerative colitis by a qualified physician.
  • You're 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 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.

  • Dermot McGovern, MD, Ph.D, FRCP, , is Director of Translational Medicine and Professor of Medicine at Cedars-Sinai Medical Center in Los Angeles. Dr McGovern is the Endowed Chair in Inflammatory Bowel Disease (IBD) Genetics and serves on the Steering Committee of the NIDDK IBD Genetics Consortium, the Management Committee of the International IBD Genetics Consortium, and the National Scientific Advisory Board of the Crohn's and Colitis Foundation of America (CCFA). Dr McGovern completed his clinical training with a focus on Crohn's disease and ulcerative colitis in Oxford, UK and holds a doctorate from the University of Oxford on IBD Genetics. Dr McGovern's research has been instrumental in identifying many of the known IBD genes and as an IBD clinician he is particularly interested in translating these genetic findings to the clinic through the development of models that predict disease behavior and response to therapy as well as identifying new areas for the development of treatments for both Crohn's disease and ulcerative colitis.
  • Nir Modiano, MD, Ph.D, is Board Certified in Internal Medicine and Gastroenterology and serves as Director of the Inflammatory Bowel Disease Program at Oregon Health and Science University, where he is an assistant Professor of Medicine in the Division of Gastroenterology and Hepatology. He obtained a Bachelor's degree, advanced graduate training in Immunology, and his medical degree at Yale. He then completed his Residency in Internal Medicine at Stanford University, his Gastroenterology Fellowship at UCLA, and his advanced Fellowship training in IBD at Cedars-Sinai Medical Center. His interest in the cultural dimensions of patient care has led him to work at a hospital in Botswana, Africa and in the Indian Health Service as part of his training, and to lead a course on The Healer's Art. His scientific experience spans molecular, clinical, and genetic research modalities, and his recent research interests include identifying genetic subtypes of Crohn's disease and investigating new treatment and diagnostic modalities in Crohn's disease and Ulcerative Colitis.
  • William Sandborn, MD, completed medical school and an internal medicine residency at Loma Linda University in Loma Linda California. He completed a gastroenterology fellowship at the Mayo Clinic in Rochester Minnesota in 1993. From 1993-2010, he was on the faculty of the Mayo Clinic, rising to Professor of Medicine, Vice Chairman of the Division of Gastroenterology and Hepatology, and Associate Dean of Research for Intellectual Property and Industry Relations. In 2011 he became Professor of Clinical Medicine at the University of California San Diego and Director of the IBD Center and Chief of the Division of Gastroenterology for the UC San Diego Health System. Dr. Sandborn has published over 444 peer reviewed articles including articles in the New England Journal of Medicine, the Lancet, JAMA, the Annals of Internal Medicine, and Gastroenterology. His research interests are clinical trials and clinical pharmacology related to inflammatory bowel disease.
  • Larry Smarr, Ph.D, is the founding Director of Calit2, the California Institute for Telecommunications and Information Technology (a UC San Diego/UC Irvine partnership,) and holds the Harry E. Gruber professorship in the Department of Computer Science and Engineering (CSE) of UCSD's Jacobs School of Engineering. He is a member of the National Academy of Engineering, as well as a Fellow of the American Physical Society and the American Academy of Arts and Sciences. In 2006 he received the IEEE Computer Society Tsutomu Kanai Award for his lifetime achievements in distributed computing systems. He serves on the NASA Advisory Council to the NASA Administrator, the DOE ESnet Policy Board, and chairs the NSF Advisory Committee on Cyberinfrastructure. For 8 years he was a member of the NIH Advisory Committee to the NIH Director, serving 3 directors. He served as PI of the NSF OptIPuter project and for the last 7 years he has been the PI of the Moore Foundation CAMERA global microbial metagenomics computational repository.
  • Jeroen Raes, Ph.D, is a professor of microbiology and immunology at K.U. Leuven in Belgium, a group leader at Brije Universiteit Brussel, and a partial faculty member at the Free University of Brussels. He received a Ph.D. from Gent University and did his postdoctoral work at the European Molecular Biology Laboratory. Dr. Raes developed computational techniques to analyze metagenomic sequence data for the discovery of genomic, phylogenetic, functional and ecological properties of microbial communities. Dr. Raes's lab works on the analysis and system-level characterization of microbial communities using next-generation sequencing and metagenomics. They are currently analyzing the composition and variability of the human intestinal microbiota in health and disease. They have optimized clinical sample extraction for gut metagenomics and developed novel ways to identify predictive biomarkers in metagenomics data and reconstruct gut metabolic and functional profiles occuring after gut ecosystem shifts.

FAQ and other resources.

Participation

  • 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 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.

  • 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 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 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 a 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 risks 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 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.

    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 (15 minutes)

  • 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 IBD
    • Participate in web-based research from the comfort of your own home
    • Be kept informed quarterly on study progress

  • 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 your genetics. You will also receive updates on project-related discoveries.

    Your 23andMe account will not be eligible to post, reply to, or join Community groups at this time.

    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 .

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

    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.

  • 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

Research

23andMe® Personal Genome Service DNA Test

  • 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.

  • 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

Before you enroll, we recommend reading these resources:

enroll now