Spondylothoracic dysostosis (STD), also known as Jarcho-Levin syndrome (JLS), is an autosomal-recessive disorder characterized by abnormal vertebral segmentation and defects affecting spine formation, with complete bilateral fusion of the ribs at the costovertebral junction producing a ''crab-like'' configuration of the thorax. The shortened spine and trunk can severely affect respiratory function during early childhood. The condition is prevalent in the Puerto Rican population, although it is a panethnic disorder. By sequencing a set of candidate genes involved in mouse segmentation, we identified a recessive E103X nonsense mutation in the mesoderm posterior 2 homolog (MESP2) gene in a patient, of Puerto Rican origin and from the Boston area, who had been diagnosed with STD/JLS. We then analyzed 12 Puerto Rican families with STD probands for the MESP2 E103X mutation. Ten patients were homozygous for the E103X mutation, three patients were compound heterozygous for a second nonsense mutation, E230X, or a missense mutation, L125V, which affects a conserved leucine residue within the bHLH region. Thus, all affected probands harbored the E103X mutation. Our findings suggest a founder-effect mutation in the MESP2 gene as a major cause of the classical Puerto Rican form of STD/JLS.

Although the importance of health care access is widely acknowledged, less is known about how partnerships can help assure access to quality health services for those experiencing health inequities. This report describes implementation of collaborative efforts through the Health Access Committee of the Latino Health for All Coalition (Wyandotte County/Kansas City, Kansas) to address its three goal areas (1) improving cultural competence through organizational change, (2) improving access to quality health services through access to diabetes prevention services, and (3) improving access and linkage to care via enrollment in health insurance. Using community-based participatory approaches, we documented and reflected on the pattern of activities facilitated by the coalition and its partners for each goal area over a 1-year period. This case report outlines strategies, activities, and lessons learned by coalition partners. This article offers practical guidance about how to structure and implement a coalition that provides technical support for increasing health care access and cultural competency.

In Puerto Rico (PR), cancer is the leading cause of death. Previous research has identified the need for cancer education in PR. Using culturally adapted cancer curricula to train local health educators may effectively increase cancer education and reduce health disparities. This article describes the three-phase process used to transcreate the Cancer 101 curriculum to train Master of Public Health (MPH) students to educate PR communities. First, an expert panel collaboratively reviewed the curriculum for content, legibility, utility, and colloquialisms. Recommendations included incorporating local references and resources, replacing words and examples with culturally relevant topics, and updating objectives and evaluation items. Subsequent focus groups with 10 MPH students assessed the adaptation’s strengths, weaknesses, and utility for future trainees. Participants were satisfied with the curriculum’s overall adaptation, ease of use, and listed resources; further improvements were suggested for all modules. Final expert panel revisions highlighted minor feedback, with the final curriculum containing nine transcreated modules. The transcreation process identified the need for changes to content and cultural translation. Changes were culturally and literacy-level appropriate, represented PR’s social context, and were tailored for future trainees to successfully deliver cancer education. Findings highlight the importance of adapting Spanish educational materials across Hispanic sub-groups.

Purpose: The community-based participatory research approach has been identified as a great asset in reducing health disparities through the integration of community members in all phases of the research process. It is essential to provide skills to community members to achieve successful research partnerships. The purpose of this study is to evaluate the feasibility, acceptability, and preliminary efficacy of the community-based participatory research training curriculum for community members.Methods: Using mixed-methods, noncomparative design, eight workshops were developed and tested. Workshops covered topics such as community-based participatory research principles, health disparities, ethics in community-based participatory research, and fundamentals of research methodology. A total of 25 community leaders were trained. Pre-/post-test knowledge (unpaired t-test), retention rate, workshop satisfaction, and cognitive debriefing sessions were used to assess knowledge gained and acceptability and feasibility of the curriculum.Results: A retention rate of 100% and an average satisfaction of 92.68% were obtained. Preliminary effectiveness results indicate that there was an overall significant change in participant's knowledge before and after the curriculum (p<0.001). In the cognitive debriefing, participants were satisfied with the organization and structure and found the curriculum feasible. Furthermore, participants identified the skills acquired to aid in being more effective in their communities and work with academic researchers. The following changes were recommended: workshops' order, time, practical activities, and level of language.Discussion: Findings from this study suggest that the curriculum was acceptable and feasible to community leaders and that it might provide skills to actively incorporate community members in research activities. A large randomized clinical trial (RCT) study to evaluate curriculum effectiveness is recommended.

The use of promotores to educate Hispanic communities about different health topics has been proven successful, albeit with limitations in program sustainability. The goal of this study was to develop a sustainable train-the-trainer model to train graduate public health (PH) students to disseminate cancer education among communities in Puerto Rico (PR). Graduate students (n = 32) from Ponce Health Sciences University's (PHSU) PH program participated in a 2-day Cáncer 101 training, where they learned how to deliver nine cancer modules to the community. Cancer knowledge was assessed before and after the training via 54 items measuring discussed concepts. Participants also assessed the training's effectiveness by completing a training evaluation informed by social cognitive theory (SCT) constructs of self-efficacy, outcome expectations, facilitation, and observational learning. Participants were mainly female (78.1 %), 26.7 ± 3.9 years old, and enrolled in a Masters-level program (81.3 %). Participants reported an average 11.38-point increase in cancer knowledge after attending the training [t(31) = 14.88, p < .001]. Participants also evaluated the training favorably upon completion, reporting satisfactory comments in the open-ended responses and high scores on measured SCT constructs. The Cáncer 101 training program effectively prepared students to deliver cancer education to local communities. Training graduate PH students to educate communities about health issues is an innovative, and potentially sustainable, way to reach underserved populations.