Assisted reproductive technology (ART) refers to fertility treatments in which both eggs and sperm are handled outside the body. The Centers for Disease Control and Prevention (CDC) oversees the National ART Surveillance System (NASS), which collects data on all ART procedures performed in the United States. The NASS, while a comprehensive source of data on ART patient demographics and clinical procedures, includes limited information on outcomes related to women's and children's health. To examine ART-related health outcomes, CDC and three states (Massachusetts, Florida, and Michigan) established the States Monitoring ART (SMART) Collaborative to evaluate maternal and perinatal outcomes of ART and improve state-based ART surveillance. To date, NASS data have been linked with states' vital records, disease registries, and hospital discharge data with a linkage rate of 90.2%. The probabilistic linkage methodology used in the SMART Collaborative has been validated and found to be both accurate and efficient. A wide breadth of applied research within the Collaborative is planned or ongoing, including examinations of the impact of insurance mandates on ART use as well as the relationships between ART and birth defects and cancer, among others. The SMART Collaborative is working to improve state-based ART surveillance by developing state surveillance plans, establishing partnerships, and conducting data analyses. The SMART Collaborative has been instrumental in creating linked datasets and strengthening epidemiologic and research capacity for improving maternal and infant health programs and evaluating the public health impact of ART.
This report describes the consensus-based selection process undertaken by a voluntary committee of policy/program leaders and epidemiologists from seven states to identify core state indicators to monitor the health of reproductive age women (aged 18-44 years). Domains of preconception health were established based on priority areas within maternal and child health and women's health. Measures (i.e., potential indicators) addressing the domains were identified from population-based, state level data systems. Each indicator was evaluated on five criteria: public health importance, policy/program importance, data availability, data quality, and the complexity of calculating the indicator. Evaluations served as the basis for iterative voting, which was continued until unanimous consent or a super majority to retain or exclude each indicator was achieved. Eleven domains of preconception health were identified: general health status and life satisfaction; social determinants of health; health care; reproductive health and family planning; tobacco, alcohol and substance use; nutrition and physical activity; mental health; emotional and social support; chronic conditions; infections; and genetics/epigenetics. Ninety-six possible indicators were identified from which 45 core indicators were selected. The scope of preconception care and the public health components to address preconception health are still under development. Despite this challenge and other measurement limitations, preconception health and health care indicators are urgently needed. The proposed core indicators are a set of measures that all states can use to evaluate their preconception health efforts. Furthermore, the indicators serve as a basis for improving the surveillance of the health of reproductive age women.
Objective
To investigate the rate of transient thyroid deficiency and treatment compliance among cases with congenital hypothyroidism diagnosed and followed-up after age 3 years by newborn screening (NBS).
Study design
Cases detected by Michigan NBS between October 1, 2003, and December 31, 2007, and followed-up after age 3 years were included. The X2 and Fisher exact tests were used to test differences among followed and lost cases. Logistic regression models were used to investigate predictors of treatment cessation.
Results
Roughly 45% of eligible cases were lost to follow-up, and disease state (transient or permanent congenital hypothyroidism) could not be determined for 12 cases (7.9%). Of the 72 followed cases, 34 (47%) were considered permanent congenital hypothyroidism based on thyroid imaging findings (n = 7) or an increase in medication dosage over time (n = 27). One-quarter of followed cases with congenital hypothyroidism were no longer being treated, and of these, just over 83% stopped treatment without medical supervision. Of 23 cases that underwent a medically supervised trial without thyroid hormone medication, treatment was reinstated in 20. Laboratory confirmation of euthyroidism was available for 6 of 18 cases clinically deemed transient. After adjustment, black race was the strongest predictor of treatment cessation (OR, 9.86; 95% CI, 1.82–53.31). Treatment cessation was also more common among low birth weight infants and those admitted to the neonatal intensive care unit at birth.
Conclusion
We recommend that NBS programs include long-term follow-up through at least age 3 years to determine treatment compliance and disease permanence. Further research is needed to determine ideal follow-up program operations and reassessment methods for congenital hypothyroidism disease permanence. Guidelines that provide evidence-based reassessment methods would be beneficial for the healthcare providers of children with congenital hypothyroidism.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.