Thank you for your interest in participating in IBD Partners, a patient-centered research study. "Patient-centered research" means that patients and researchers partner with each other and work as a team. Your input is critical to the research process. Working together, patients and scientists hope to improve the quality of life for patients with IBD.
By joining IBD Partners you can contribute to IBD research in many ways, such as by completing surveys, providing additional information about your health, and submitting research questions. You will team up with researchers to answer important questions about IBD. In addition, you will be able to use our website to track your health trends and see how your treatments and IBD status compare to that of others in the network.
The Crohn's & Colitis Foundation is a sponsor of IBD Partners. The Foundation manages a research exchange platform named IBD Plexus ("Plexus"). Plexus is a collection of health information about IBD patients from different research studies, including IBD Partners. By combining data from different research studies, we hope to gather enough data to accelerate research and transform the care of patients living with IBD. We are proud to be one of the first research studies integrating data into Plexus.
Who is sponsoring this study?
This research is funded by the Crohn's & Colitis Foundation and the Patient-Centered Outcomes Research Institute (PCORI) (the sponsors). This means that the research team is being paid by the sponsors for doing the study. Data collected in this study include treatment information for specific diseases, including the use of drugs that are manufactured by a variety of pharmaceutical companies. These data may be used in other studies for additional research where Dr. Michael Kappelman or Dr. Millie Long, co-investigators, or other investigators have a financial interest with the pharmaceutical companies.
If you would like more information, please send an email to firstname.lastname@example.org.
Here's what you can expect:
If you choose to participate, we will ask you to provide information about your disease and treatment by completing online surveys every 6 months. If you do not feel comfortable answering a survey question, you do not have to answer it. You will also have the option, if you want, to connect a variety of mobile health applications (e.g. Fitbit, Jawbone, etc.) to our patient centered network. You can easily disconnect your mobile health application at any time.
We will touch base with you periodically to let you know about the progress of the program and to provide information about IBD. You can log on to our website to view up-to-date information about the study and update and track your health status. Every 6 months, we will ask you to provide an update about your treatments and health. From time to time, we will let you know about additional research studies for which you might be eligible. These additional research studies may provide you with compensation, and you can choose whether to accept or decline participation at that time.
All data that you enter will be stored in a secure manner and may be retained by IBD Partners and the Crohn's & Colitis Foundation indefinitely, even after you terminate your account. No personal information will be released to an outside party or disclosed publicly; however, de-identified health data may be used for research purposes. This includes studies that may be funded by non-profit or for-profit entities.
The Crohn's & Colitis Foundation may contact you for purposes related to its programs and activities such as educational, fundraising, and research opportunities. You can opt out of receiving these emails at any time by unsubscribing from the Crohn's & Colitis Foundation mailing list.
Here's what we'll do:
Your privacy matters to us. We will work diligently to protect the health data we collect from you during this study. Neither the Crohn's & Colitis Foundation nor the IBD Partners research team will ever release your contact information to anyone at any time without your permission. Identifiers, such as your name and address, will not be used in research and will be maintained securely. Any research study associated with new data collection must first undergo review and approval by a project selection committee of expert scientists and IBD patients. Counts of patients who meet certain criteria are sometimes needed to assist in planning studies. At times we will make this aggregate count data available to qualified researchers prior to committee review.
We will never sell your data to drug companies for market research. Qualified researchers will be able to explore the data in IBD Partners and IBD Plexus for insights into the causes of and potential treatments for IBD. These qualified researchers come from academic, government, non-profit, and for-profit organizations (including pharmaceutical companies) that in some instances contribute funds to the Foundation to support its mission.
You will be able to view the names of IBD Partners researchers who have been granted access to your de-identified data along with a description of the particular research study on the network website. We will also notify you about research findings published in abstracts and scientific papers that used IBD Partners data.
Here's what you need to know as you get started:
Keep in mind all questions are optional; that is, you don't have to answer any questions that you don't want to answer. You can withdraw from the study at any time. We will not associate you with any response in any reports of survey results. There is no cost to you.
Again thank you for helping us. We believe this project has excellent long-term potential to improve our understanding of IBD and the quality of life of patients with IBD.