RESUMEN
SPARCRequest© (Services, Pricing, & Application for Research Centers) is a web-based research management system that provides a modular and adaptable "electronic storefront" for research-related services. Developed by the South Carolina Clinical & Translational Research Institute at the Medical University of South Carolina, it was released as open source (OS) code in 2014. The adoption of SPARCRequest© accelerated in 2016, when, to ensure responsiveness to the needs of partners, its governance also became open. This governance model enables OS partners to suggest and prioritize features for new releases. As a result, the software code has become more modularized and can be easily customized to meet the diverse needs of adopting hubs. This article describes innovative aspects of the OS governance model, including a multi-institutional committee structure to set strategic vision, make operational decisions, and develop technical solutions; a virtual roadmap that ensures transparency and aligns adopters with release-based goals; and a business process model that provides a robust voting mechanism for prioritizing new features while also enabling fast-paced bug fixes. OS software evolves best in open governance environments. OS governance has made SPARCRequest© more responsive to user needs, attracted more adopters, and increased the proportion of code contributed by adopters.
RESUMEN
Proactive nutritional management for children with spinal muscular atrophy type I can provide insight into improved spinal muscular atrophy care. This observational study consisted of a nutritional and medical history survey of children with spinal muscular atrophy type I collected in 2009-2011. Forty-four caregiver survey responses were evaluated using descriptive statistics. Average age of spinal muscular atrophy type I subjects was 5 years (5 mo-16 y). The subject cohort was composed of 22 males, 21 females, and 1 unreported. Nutrition support via feeding tube was utilized by 43 of 44 subjects. A majority of respondents reported using elemental or semi-elemental formula for subjects' essential caloric intake (34 of 44). Formula intolerance issues were reported by many caregivers (27 of 44). Half of caregivers implemented dietary changes on their own or with guidance from other families; 15 caregivers consulted a registered dietitian. Survey responses and comments indicate need for evidence-based nutritional guidelines for spinal muscular atrophy.