Patients
The Inflammatory Bowel Disease (IBD) Genetics Consortium is currently recruiting patients with IBD to participate in research studies. We are especially interested in individuals who are members of racial or ethnic minority groups with an official diagnosis of Crohn's Disease, Ulcerative Colitis or Indeterminate Colitis . If you are in one of these groups and would like more information about participating in a Consortium study, please contact us at contact@ibdgc.org
The IBDGC has partnered with BuildClinical to make it easier for patients from all over the United States to participate in the IBDGC Diversity Study. To see if you're eligible fill out this short questionnaire :
FAQ - Patients Interested in Participating In IBD Research
What is a Research Study?
A research study is when scientists try to answer a question about something that we do not know enough about. The questions usually revolve around how to slow disease progression, why some patients respond to therapies better than others, and overall aim to improve health outcomes. Patient participation is a key component of research studies and crucial in advancing future drug discovery and developing new therapeutic targets. You can think of research as the first step in this process.
What is the purpose of this Research Study?
You may qualify to take part in this research study because you have been diagnosed with Crohn’s disease, Ulcerative Colitis or Indeterminant Colitis and self identify as of African, African American, Black, Afro-Caribbean, Afro-Latino/a/x, Latino/a/x, Hispanic, Native American or any other Black or Latin background.
The goal of this study is to establish a diverse IBD Genetics Biobank to help us better understand the genetic, immunological, and environmental factors that might influence disease progression. This study aims to better understand the role of genetics, immune system, environment, medication, smoking and diet in Crohn’s disease, Ulcerative Colitis and Indeterminant Colitis with an emphasis on diversifying ongoing IBD research . We hope that our findings will help your physician better optimize your medication and care. This study is ongoing in several sites across the United States and Canada.
What is classified as recurrence and remission?
Recurrence can either be histological (inflammation is only visible through a microscope), endoscopic (inflammation is visible to your doctor during endoscopy), clinical (you will have increased IBD symptoms) or Surgical (your symptoms are severe enough for surgery). Remission is defined as the temporary absence of active disease. Remission can either be endoscopic (no evidence of inflammation during your endoscopy) or clinical (you may have reduced or no symptoms).
What is involved in participation?
If you agree to participate in this study, you will be asked to complete a questionnaire about you experience with IBD and to provide a saliva or blood sample ( based on your preference). This is a one time participation study, however, we may ask you to participate in another research study at a later date. Participation is entirely voluntary.
What do we do with your samples?
Currently, the only study the IBDGC is recruiting patients for is the Diversity Study. The de-identified DNA samples obtained for this study are sent for Whole Exome Sequencing in collaboration with the Broad Institute.
Will I receive results back?
We will de-identify your data, so any information we collect from you cannot be linked back to you and because of this, we will not be able to give you any results. When the study is complete and our results are published, you will be able to read about our findings. You can go the Featured Publications page to see some of the work the IBDGC has published or our Zotero library for a comprehensive list of publications.
Where can I get more information?
You can find additional resources at the Crohn’s and Colitis Foundation, Color of Crohn's and Chronic Diseases.