EHR-Based Longitudinal Cohort to Explore Pregnancy Outcomes in SLE (ELIPTCL)
Abstract
Systemic lupus erythematosus, also known as SLE or lupus, is a chronic autoimmune disease in which the body mistakenly attacks itself, leading to a host of medical problems ranging from skin rashes, joint pains, and extreme tiredness to organ failure, such as the kidney, in which the person needs dialysis or a kidney transplant. Lupus is one of the chronic diseases monitored by the military. Lupus strikes women during their childbearing years, so pregnancy counseling is an important part of taking care of the future mother with this disease. If the mother is sick from lupus when she becomes pregnant, the mother’s health may get worse, and the baby may be born too soon or too small, and in some cases may not live. We urgently need to reduce the risk of bad pregnancy outcomes for mothers with lupus and their babies. The goal of the ELIPTCL project is to develop tools to use with the electronic health record so that the mother receives the best advice for her and her baby’s care prior to, during, and after pregnancy. The outcome of the ELIPTCL project would be a mother with lupus not getting sick and having a healthy baby. The ELIPTCL project will be a 2-year effort to develop and test the tools that include the recommendations of rheumatologists who care for women with lupus, especially when they are pregnant. Once the tools are validated, the tools would be shared with other healthcare providers so that we can help as many as women as possible who are in most need of this advice. The tools to be developed are built on mining information from the Electronic Health Records, using a common or shared data model that different medical institutions agree to use in order to share and align patient information in their efforts to improve the health of their patients. The ELIPTCL project follows all federal and local privacy and confidentiality rules to protect the personal information of the mother and baby. The ELIPTCL project includes rheumatologists who care for women with lupus and who helped developed guidelines or recommendations to help healthcare providers with this specialized care during pregnancy. The ELIPTCL project addresses the Focus Area centered around understanding how the different ways lupus disease presents in the setting of pregnancy influences the risk of disease presentation, clinical course, and outcomes using epidemiological and medical informatics as research methods to help mother and baby do well and enjoy this special time in their lives. This is especially relevant for the military, where there is an active and diverse female workforce in which approximately 50% of the women are in their childbearing years.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Mar 10, 2021
- Source ID
- W81XWH2010692
Entities
People
- Rosalind Ramsey-goldman
Organizations
- Northwestern University
- United States Army