Network Types for End-Of-Life Care and Home Deaths Among Older Adults in Europe During COVID-19 Pandemic.

The study identified care network types comprising informal and formal care providers during the end-of-life period, and examined their relationship with home deaths. End-of-life interviews were conducted with proxies during the two waves of the COVID-19 pandemic in the Survey of Health, Ageing and Retirement in Europe (SHARE). The sample included 486 participants who passed away during the pandemic and received care during their final year.

Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry.

Participant representation, including the Good Participatory Practice guidelines, in the design and execution of clinical research can profoundly affect research structure and process. Early in the COVID-19 pandemic, an online registry called the Healthcare Worker Exposure Response and Outcomes (HERO) Registry, was launched to capture the experiences of healthcare workers (HCWs) on the pandemic frontlines. It evolved into a program that distributed COVID-19-related information and connected participants with COVID-19-related research opportunities.

Discovery of a DNA methylation profile in individuals with Sifrim-Hitz-Weiss syndrome.

Pathogenic heterozygous variants in CHD4 cause Sifrim-Hitz-Weiss syndrome, a neurodevelopmental disorder associated with brain anomalies, heart defects, macrocephaly, hypogonadism, and additional features with variable expressivity. Most individuals have non-recurrent missense variants, complicating variant interpretation. A few were reported with truncating variants, and their role in disease is unclear.