Discrimination and violence targeting people perceived as gender nonconforming have been linked to a range of negative health outcomes, and large-scale representative data are needed to begin population surveillance of associated health disparities. A brief self-report measure of gender expression as perceived by others was tested using cognitive interviewing methods in a diverse sample of 82 young adults aged 18–30 years, recruited from the New England region in the U.S. Results identified themes related to item clarity, gender expression variation, undesirability of highest or lowest ends of item range, and tension between self and others’ perceptions. The item performed as expected and is recommended for use on studies of health disparities, including statewide and national public health surveillance tools.

Globally, an estimated 350 million people are affected by a rare disease diagnosis. Knowledge limitations persist for the majority of rare conditions due to systemic and structural challenges in healthcare and research. Disease-specific patient populations are often small and geographically dispersed; funding support for research is restricted; and diagnostic delays are common due to disease complexities, limited medical training for practitioners, and evolving foundational knowledge related to disease characterization. Patient registries can be effective, convenient, and cost-efficient tools to support documentation of the natural history of a disease, centering patients as research partners in the process while uniting rare communities around a common initiative. Current global trends towards innovative and patient-centered healthcare are enabling patient registries to increasingly emerge as valuable tools for use within rare disease research and drug development. This article describes the value of and rationale for establishing rare disease patient registries and the considerations and challenges that stakeholders, such as researchers, industry, health care providers, and patient community organizations, may encounter.

BackgroundMaternal mortality, although largely preventable, remains unacceptably high in developing countries such as Malawi and creates a number of intergenerational impacts. Few studies have investigated the far-reaching impacts of maternal death beyond infant survival. This study demonstrates the short- and long-term impacts of maternal death on children, families, and the community in order to raise awareness of the true costs of maternal mortality and poor maternal health care in Neno, a rural and remote district in Malawi.MethodsQualitative in-depth interviews were conducted to assess the impact of maternal mortality on child, family, and community well-being. We conducted 20 key informant interviews, 20 stakeholder interviews, and six sex-stratified focus group discussions in the seven health centers that cover the district. Transcripts were translated, coded, and analyzed in NVivo 10.ResultsParticipants noted a number of far-reaching impacts on orphaned children, their new caretakers, and extended families following a maternal death. Female relatives typically took on caregiving responsibilities for orphaned children, regardless of the accompanying financial hardship and frequent lack of familial or governmental support. Maternal death exacerbated children’s vulnerabilities to long-term health and social impacts related to nutrition, education, employment, early partnership, pregnancy, and caretaking. Impacts were particularly salient for female children who were often forced to take on the majority of the household responsibilities. Participants cited a number of barriers to accessing quality child health care or support services, and many were unaware of programming available to assist them in raising orphaned children or how to access these services.ConclusionsIn order to both reduce preventable maternal mortality and diminish the impacts on children, extended families, and communities, our findings highlight the importance of financing and implementing universal access to emergency obstetric and neonatal care, and contraception, as well as social protection programs, including among remote populations.

A one-year-old female neutered beagle was presented with marked abdominal effusion. Echocardiography showed marked dilatation of the right cardiac chambers, an atrial septal defect and severe tricuspid insufficiency. Systolic pulmonary arterial pressure (sPAP), evaluated by continuous wave Doppler echocardiography, was very high (80 mmHg), with a right to left interatrial shunt. The radiographic images were compatible with widespread pneumonitis. Numerous larvae of Angiostrongylus vasorum were visible on direct faecal examination. The animal was given fenbendazole for 15 days, combined with diuretics, an antibiotic and a vasodilator. Two weeks later, the dog showed a marked improvement. The treatment, except the anthelmintic, was continued for seven weeks and then stopped. At that stage, Doppler echocardiography revealed that the sPAP had returned to normal (20 mmHg) and the interatrial shunt had reversed (left to right). Eighteen months later, clinical and Doppler echocardiographic examinations were normal.