Portal for Families Overcoming Neurodevelopmental Disorders (PFOND): Implementation of a Software Framework for Facilitated Community Website Creation by Nontechnical Volunteers
作者： Xin Cynthia Ye , Isaiah Ng , Puya Seid-Karbasi , Tuhina Imam , Cheryl E Lee
DOI: 10.2196/RESPROT.2675
关键词:
摘要: Background: The Portal for Families Overcoming Neurodevelopmental Disorders (PFOND) provides a structured Internet interface the sharing of information with individuals struggling consequences rare developmental disorders. Large disease-impacted communities can support fundraising organizations that disseminate Web-based through elegant websites run by professional staff. Such quality resources families challenged disorders are infrequently produced and, when available, often dependent upon continued efforts single individual. Objective: project endeavors to create an intuitive software system allows volunteer limited technical computer skills produce useful disease website in short time period. should provide access emerging news and research findings, facilitate community participation, present summary about disorder, allow transient management volunteers who likely change periodically. Methods: prototype portal was implemented using WordPress both existing customized supplementary plug-in modules. Gamification scoring features were module, allowing editors measure progress. installed on Linux-based server, accessible across standard Web browsers. Results: A PFOND tested. organization distinct partitions background information, recent publications, discussions. design themed website, implement set topic pages, connect dynamic RSS feeds providing or advances. assessed fraction sites developed (8 out 27), including Aarskog-Scott syndrome, Aniridia, Adams-Oliver Cat Eye Kabuki Leigh Peters anomaly, Rothmund-Thomson syndrome. editor progress score used performance portion sites. Conclusions: convenient resource facilitated creation confronted empowers participate content, while inevitable turnover contributors over time. next phase development will focus participation engagement. [JMIR Res Protoc 2013;2(2):e25]
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