FAQ (Frequently Asked Questions)
What is IBD Partners?
IBD Partners is a long-term online study of individuals with Crohn’s disease and ulcerative colitis. IBD Partners is what’s called a patient-powered research network, which means patients and researchers in our network work together to find better treatments for inflammatory bowel diseases (IBD).
Patients contribute by providing information about their health and experience living with IBD and by suggesting and voting on research questions they’d like answered. We even have patients who serve on our governance committees. Researchers contribute by prioritizing research questions proposed by patients and by updating participants about how their information is used and what’s discovered.
Working together, patients and researchers in our network hope to learn how different health behaviors and treatment therapies affect IBD. We hope having a better understanding of these relationships will lead to treatments that are more effective and can be individualized.
What do I have to do to participate?
Participation is simple. We’ll ask you to:
- Register for the patient portal (It will only take a few minutes)
- Complete an online survey about your condition and treatment, quality of life, and health behaviors (such as sleep habits)
- Connect your mobile health applications (such as Fitbit), if you would like to share that data
- Fill out an online survey every six months to tell us how you’re doing
- Complete a short survey (only 3-4 questions) each time you login to the network website
- Let us know if you want to participate in other smaller studies that we will tell you about from time to time
To register and start your first survey, click here
What is PCORI?
PCORI stands for Patient Centered Outcomes Research Institute. PCORI is a nonprofit organization that funds research projects across the country committed to Patient-Centered Outcomes Research (see definition below). The IBD Partners study is in part funded by PCORI. Find more information about PCORI here.
What is Patient-Centered Outcomes Research?
“Patient-Centered Outcomes Research” is a term used by PCORI to describe research focused on answering the questions that are most important to patients. It involves patients, caregivers, and clinicians, along with researchers, throughout the research process. The IBD Partners study proudly participates in Patient-Centered Outcomes Research.
How much does it cost?
Participation is free. There is no cost to you.
Can I opt out?
Once you join the partnership, you can opt out at any time by contacting us at email@example.com
I have friends or relatives with IBD. Can they join?
Participation is open to anyone 18 years of age or older who has been diagnosed with Crohn’s disease or ulcerative colitis. Interested IBD patients can go to our website -- www.ibdpartners.org -- and join. If under age 18, please visit IBD Partners Kids & Teens study
Do I have to answer all the questions?
The questions are generally straightforward and about your disease characteristics, but if any questions make you uncomfortable or if you don't want to answer a question, you can skip it.
How long does the survey take?
The initial survey should take about 20 minutes. The length will depend, in part, on your disease type and treatment.
Is my information safe?
We will work hard to protect the information you provide to IBD Partners. Your information will always be stored in a very secure computer server at the University of North Carolina. We will not give your contact information to anyone without your permission. Identifiers, such as your name and address, will not be used in research and will be kept securely. Reports about the survey will not identify you or any other participant --- we will just provide summary data.
How will my information be used?
The information you provide through surveys and by connecting your mobile health applications (such as FitBit, JawBone, etc.) will be studied by Crohn's & Colitis Foundation researchers. Researchers will use this information to learn more about treatment effects, health behaviors, and quality of life for individuals with IBD. The information you contribute ultimately will help in reaching the goal of more rapid research progress, better treatments, and the cures we need.
What are the risks?
What do I get for participating?
You do not receive monetary compensation for participating in IBD Partners. You will benefit from use of website features, such as the health tracker and social network (currently under development), that we hope will help you better understand your disease and find support.
How do I join IBD Partners?
It’s easy to join our patient portal. You will need to provide your email address and create a password to register. We will send you an email confirmation to sign in. You will be asked a few simple questions before being taken to our patient portal. That’s it. The entire process only takes a few minutes. You can then begin contributing research data by completing your baseline survey when you have time (about 15-20 minutes). Please follow this link to join.
How do badges work?
Everyone in our network is a Citizen Scientist! There are eight Citizen Scientist Badges. Each badge represents a way in which you can contribute to the network. The level for each badge starts at zero and increases as you get more involved. Here is a summary of how the level for each badge increases:
1. Survey Responder (Highest Achievable Level=5): Your level increases if you complete IBD Partners Surveys. You reach the highest level once you’ve completed five or more surveys. You will receive an email and portal notification when your survey opens (about every six months).
2. Health Reporter (Highest Achievable Level=6): Your level increases if you complete health check-ins on the portal. You can complete a health check-in by answering 2-3 questions presented under the “Daily Health and Disease Activity Score Calculator” found at the top of the My Health Data section. Health check-ins can be completed as often as you’d like.
3. Research Participator (Highest Achievable Level=6): Your level increases when the health data you contributed to IBD Partners is used for research studies. You only need to complete your regular 6-month surveys for your data to be used in studies. You can view a list of studies for which your data has been used in the My Contributions section.
4. Research Proposer (Highest Achievable Level=3): Your level increases if you propose a research idea and also if your idea becomes popular (receives a lot of votes). To propose a research idea, visit Research Ideas.
5. Voter (Highest Achievable Level=2): Your level increases if you cast votes for proposed research ideas. You have up to five votes to cast. You can change your votes at any time. To cast your votes, visit Research Ideas.
6. Discusser (Highest Achievable Level=3): Your level increases if you comment on a proposed research idea and also if a research idea you proposed receives comments. To comment on and/or propose a research idea, visit Research Ideas.
7. Community Face (Highest Achievable Level=1): Your level increases if you create a social profile that other members can see. To create a social profile, click here.
8. Promoter (Highest Achievable Level=5): Your level increases if you refer friends with IBD to the network and your friend signs-up with your unique referral code. Go to the Members page to refer a friend.
The levels for all badges are summed to get your overall Citizen Scientist Score. The highest possible Citizen Scientist Score is 31.
Do I need my password to take Partners surveys?
You will not need your password if you complete your survey by clicking on the link we will email you when it’s time to take a survey. Your password is included in these emails and will automatically log you into your survey. However, if you complete your survey by logging into ibdpartners.org directly, you will need to know the email and password you used to sign up.
What if I lost my email with the link to my survey?
You can always complete your available survey by visiting ibdpartners.org. We would also be happy to send you another email with a link to your survey, if that's more convenient for you. To request that your survey link be sent again, please contact us at firstname.lastname@example.org . Please include the email address you have registered with IBD Partners in your request.
What if I have more than one email address?
You can give us alternate email addresses, but only one address can serve as your primary (registered) address. By giving us your alternate addresses, we can make sure you don't get multiple copies of our email reminders; they will always go only to your primary address.
I received more than one email to join IBD Partners. Why?
Each email address on file with Crohn's & Colitis Foundation received an invitation, so if you had more than one email address with Crohn's & Colitis Foundation, you received multiple invitations. To prevent this, please provide Partners with your alternate email addresses so we will know you are the same person. Contact us at email@example.com.
What should I do if I have a technical problem?
For technical issues, please contact us at firstname.lastname@example.org.
What if I have more questions?
Feel free to reach out with any additional questions. For contact information, click here.