MIRACLE study

Who are we?

Maternal Immunity, Reproduction, and Inborn Errors of Immunity Collaboration (MIRACLE) is a multi-center research study dedicated to understanding fertility, pregnancy, and reproductive health in individuals with genetically-driven immune disorders (aka inborn errors of immunity, primary immunodeficiency). The research is being conducted by a team of immunologists, maternal-fetal medicine specialists, geneticists, and nurse practitioners across the United States; MIRACLE is supported in part by the Immune Deficiency Foundation. 

The challenge

• Very little research exists on fertility and pregnancy outcomes in people with genetically-driven immune disorders.
• Medications that individuals with genetically-driven immune disorders have been treated with (e.g. conditioning prior to hematopoietic stem cell transplantation) may affect fertility, but the precise relationship and how to mitigate this risk is unknown.
• Many Ob/Gyn providers are unfamiliar with genetically-driven immune diseases and how they can affect fertility/pregnancy.
• Severe maternal complications can occur in individuals with genetically-driven immune diseases including severe infections, low blood counts, bleeding, blood clots, liver and kidney disease, cardiovascular disease, and flares of autoimmunity/autoinflammation.
• There are few guidelines on how to adjust medications during family planning, pregnancy, and breastfeeding.
• Patients report feeling their immune condition was overlooked during prenatal care and pregnancy.

Our goals

• To understand patient and provider concerns about fertility and pregnancy in individuals with genetically-driven immune disease.
• To link fertility and pregnancy outcomes to specific immune diagnoses.
• To develop guidelines and tools for better coordinated care between immunology and Ob/Gyn teams.

Participating sites (study investigator)

Currently enrolling:

• National Jewish Health, Denver, Colo. (Jessica Galant-Swafford, M.D.)
• Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York (Xiao Peng, M.D., Ph.D.)
• Medical College of Wisconsin, Milwaukee, Wisc. (Kris Bolling, DNP)
• Columbia University, New York City, New York (Jennifer Chester, M.D.)

Coming soon:

• University of Colorado, Aurora, Colo. 

Get involved

Who can participate?

• Individuals of any gender with a diagnosed or suspected genetically-driven immune disorder (you do NOT need a confirmed genetic diagnosis to participate).
• Adolescents greater than age 12 can participate at some sites with parental consent.

What does participation involve?

• An online survey about your fertility, pregnancy, and reproductive health experiences.
• $10 gift card after completing the survey.
• Optional: A 30–60-minute virtual interview about your reproductive experiences.
• Review of your medical records by the research team.
• No blood draws, procedures, or extra visits required.
• If you are female and do become pregnant while enrolled in the survey, the research team will collect additional immunologic laboratory data to assist with close monitoring during pregnancy and collaborate with your obstetrician-gynecologist.