Portal for Families Overcoming Neurodevelopmental Disorders (PFOND): Implementation of a Software Framework for Facilitated Community Website Creation by Nontechnical Volunteers.

[aniridia]

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

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aniridia

kabuki syndrome

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