Frequently Asked Questions About the CDGEMM Study

Get answers to frequently asked questions about the Celiac Disease Genomic Environmental Microbiome and Metabolomic (CDGEMM) study.

I’m pregnant. Can I start the enrollment process already?

Yes! We encourage parents to consider enrollment as early as during pregnancy. Though sample collection for the study won’t start until your child’s time of birth, enrolling during pregnancy provides a unique opportunity to follow your child’s gut microbiome (see “About CDGEMM” for more information about the gut microbiome) from the earliest stages. Enrolling your child during gestation also provides the opportunity for you to donate umbilical cord blood at your child’s time of birth. This optional portion of the study will help researchers learn more about the influence of genetics on developing CD.

My husband/wife/child is diagnosed with celiac disease, but not by biopsy. Is my child still eligible for participation?

The short answer is possibly! You should contact us to inquire about enrollment even if your husband/wife or child was not originally diagnosed by biopsy. We will carefully consider each diagnosis and make exceptions to the biopsy requirement on a case-by-case basis.

Does the study require me to feed gluten to my child?

No. The CDGEMM study does not dictate if or when you introduce any foods into your child’s diet. Your child is not required to eat gluten while they are enrolled in the study. Our study data collection forms do ask questions about your child’s diet, but does not require that certain foods be included or excluded.

I’m not planning on introducing solid foods until my child is 6 months old. Why should I enroll before then?

In order to understand how early environmental factors may contribute to the development of celiac disease, it is best if we begin collecting samples and data from birth. We know that the first year of life is an incredibly important period in a child’s development, particularly of the immune system and the gut microbiome. Obtaining early stool samples and clinical information will allow us to best determine how early environmental factors affect the development of disease in children. This will provide a more complete picture of microbial changes or environmental triggers that may contribute to celiac disease onset.

I’m interested in my child participating in CDGEMM. How do I get started?

Email us at CDGEMM@mgh.harvard.edu to get the enrollment process started. We will answer any questions that you may have and discuss the study in a bit more detail, including going over the study consent form. We can also direct you to a local study site, if there is one near you, or help you speak with your child’s pediatrician about drawing blood for the study.

What do I do if I want my infant to participate in the study, but I can’t find a center near me?

Study visits can be completed “from home” with blood draws at your child’s pediatrician or at a walk-in medical facility. In this case, your participating center will mail the tube(s) and instructions to you when your child reaches a collection date. Contact the center closest to you to learn more about how you can receive all of your study materials by mail.

My child has a stool sample coming up, but I can’t remember how to collect it.

No problem! Download stool sample collection instructions (PDF).

Are you an investigator that is interested in bringing CDGEMM to your institution?

We are always open to new collaborations in the United States and beyond. Contact Victoria at vakenyon@partners.org for more information.