title: Portal for Families Overcoming Neurodevelopmental Disorders (PFOND): Implementation of a Software Framework for Facilitated Community Website Creation by Nontechnical Volunteers.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
authors.forename: Xin Cynthia
authors.initials: XC
authors.lastname: Ye
authors.forename: Isaiah
authors.initials: I
authors.lastname: Ng
authors.forename: Puya
authors.initials: P
authors.lastname: Seid-Karbasi
authors.forename: Tuhina
authors.initials: T
authors.lastname: Imam
authors.forename: Cheryl E
authors.initials: CE
authors.lastname: Lee
authors.forename: Shirley Yu
authors.initials: SY
authors.lastname: Chen
authors.forename: Adam
authors.initials: A
authors.lastname: Herman
authors.forename: Balraj
authors.initials: B
authors.lastname: Sharma
authors.forename: Gurinder
authors.initials: G
authors.lastname: Johal
authors.forename: Bobby
authors.initials: B
authors.lastname: Gu
authors.forename: Wyeth W
authors.initials: WW
authors.lastname: Wasserman
keywords: consumer participation; inborn genetic disease; medical genetics; medical informatics; rare disease; social media
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