Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease.

PURPOSE OF REVIEW: Patient engagement is defined as the meaningful involvement and active partnership of patients and key partners throughout the entire research project. This article reviews the importance of developing a patient engagement plan to promote better alignment of research with patients' and clinicians' real-world needs and concerns. RECENT FINDINGS: The Congenital Heart Initiative (CHI) launched in 2020 is an entirely web-based longitudinal registry designed in close coordination with the adult congenital heart disease (ACHD) community it is intended to serve. Successful community engagement has resulted in real-world data being collected in large scale in a rare disease population. Establishing patient engagement plans is critical to conducting patient-centered outcomes research. Continued improvement of community engagement strategies is needed to ensure the entire ACHD population is represented to facilitate future research and improved clinical care.

Risk of Cancer in a Community Exposed to Per- and Poly-Fluoroalkyl Substances.

BACKGROUND: Per- and polyfluoroalkyl substances (PFAS) emissions from a plastic coating industrial source in southern New Hampshire (NH) have contaminated at least 65 square miles of drinking water. Prior research indicates that high levels of PFAS are associated with a variety of adverse health outcomes, including an increased risk of cancer. Reports indicate that mean blood serum levels of perfluorooctanoic acid (PFOA), one type of PFAS, in residents of the exposed community are more than 2 times greater than the mean blood serum level in the US. Merrimack public water supply customers also have higher average blood levels of perfluorooctane sulfonic acid (PFOS) and perfluorohexane sulfonic acid (PFHxS) than the time-matched US average. A 2018 report concludes that the incidence rate of cancer in Merrimack does not exceed the incidence rate of cancer in NH in general. However, prior reporting on the risk of cancer in Merrimack is compared only to a state-wide metric influenced by the Merrimack cancer incidence. METHODS: Our ecological study compared the risk in Merrimack, NH residents for 24 types of cancer between 2005 and 2014, targeted in a previous study, and all-cause cancers, to US national cancer rates and cancer rates in demographically similar towns in New England. Four New England "unexposed towns" were chosen based on demographic similarity to Merrimack, with no documented PFAS exposure in water supplies. We utilized unadjusted logistical regression to approximate risk ratios (RR) and 95% confidence intervals (CI) assessing the risk of cancer in Merrimack NH to each of the 4 comparator communities, the pooled comparator variable, and national average incidence. RESULTS: Residents of Merrimack, NH experienced a significantly higher risk of thyroid cancer (RR = 1.47, 95% CI 1.12-1.93), bladder cancer (RR = 1.45, 95% CI 1.17-1.81), esophageal cancer (RR = 1.71, 95% CI 1.1-2.65), and mesothelioma (RR = 2.41, 95% CI 1.09-5.34), compared to national averages. Our work also suggests that Merrimack residents experienced a significantly higher risk of all-cause cancer (RR = 1.34, 95% CI 1.25-1.43), thyroid cancer (RR = 1.69, 95% CI 1.19-2.39), colon cancer (RR = 1.27, 95% CI 1.02-1.57), and prostate cancer (RR = 1.36, 95% CI 1.15, 1.6) compared with similarly exposed New England communities. Our results indicate that residents of Merrimack may also have a significantly lower risk of some site-specific cancers compared to national averages, including lower risk of prostate cancer (RR = 0.57, 95% CI 0.5-0.66), female breast cancer (RR = 0.60, 95% CI 0.52-0.68), ovarian cancer (RR = 0.52, 95% CI 0.33-0.84) and cervical cancer (RR = 0.29, 95% CI 0.12-0.69). CONCLUSION: Merrimack residents experienced a significantly higher risk of at least 4 types of cancer over 10 years between 2005 and 2014. Merrimack is a community with documented PFAS contamination of drinking water in public and private water sources. Results indicate that further research is warranted to elucidate if southern NH residents experience increased risk for various types of cancer due to exposure to PFAS contamination.