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Cure4Kids 2007 Annual Report

Cure4Kids 2007 Annual Report

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About Cure4Kids Established as an initiative of the International Outreach Program, the Cure4Kids web site brings the latest medical knowledge on the treatment of pediatric catastrophic diseases to health care providers worldwide. The web site offers a digital library, on-demand seminars with slides and audio in several languages, and online meeting rooms for international collaborations. Cure4Kids was launched on October 1, 2002 with 35 users and 5 online seminars. In 2007, the number of users grew from 9,013 (Jan 1, 2007) to 12,710 (Dec 31, 2007). As of April 30, 2008, Cure4Kids had 14,000 users from 160 countries. Our southernmost users come from Tierra del Fuego, Chile (latitude 53째 south) and Hobart, Tasmania (latitude 42째 south). Our northernmost users are from Troms, Norway (latitude 69째 north) and Oulu, Finland (latitude 64째 north). Cure4Kids has over 1,000 online educational seminars. The online content has been accessed over one million times.

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New Initiatives

Oncopedia, which was launched in June 2007, is a freely accessible interactive resource on the Cure4Kids web site. It provides practical and current disease-specific information to pediatric oncologists, hematologists, physicians, and other health care professionals. The open participatory features of Oncopedia were influenced by leading web sites such as WikipediaŽ, with the added benefit of an international expert editorial board. Rare cases that are not usually discussed even in exclusive international medical journals are available for review. All material can be freely used and downloaded for reference and educational purposes. Oncopedia content is contributed by the users of Cure4Kids through an online submission and review process. The topics may include complex hematology/oncology cases and images, controversial topics, and interesting presenting features, including illustrations of patients’ clinical characteristics and imaging and pathology findings. An international editorial board reviews all contributions. Cases chosen for Oncopedia are posted with expert commentary from our editorial board and opened for online, moderated discussion. Registered Cure4Kids users can interact online with other users and the editorial board by posting comments, opinions, and questions about the content. As of May 1, 2008, Oncopedia has published 24 case descriptions, 3 videos, 46 images, and 6 monographs. A total of 111 comments were posted. Oncopedia has been visited by 2,280 registered Cure4Kids users and the content has been accessed 17,588 times.

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Educational Content Online Continuing Education Cure4Kids began in 2002 with 5 seminars and as of April 30, 2008, it contained 1,062 online seminars, 28 self-paced online courses, and recorded sessions from 30 international conferences. The online educational content includes: • A total of 1,019 on-demand seminars with slides and audio in several languages including English, Spanish, Portuguese, Chinese, Arabic, French, and Russian. • The Cure4Kids Pediatric Nursing Oncology course that has been accessed 12,337 times by 8,625 users. • The ELNEC Palliative Care course that has been accessed 33,393 times. • Keynote seminars from the annual conferences of the International Society of Pediatric Oncology (SIOP) from 2004 to date. The 62 SIOP keynote seminars on Cure4Kids have been accessed 123,702 times by 2,621 users. • A total of 70 Grand Round seminars from Le Bonheur Children’s Hospital.

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New Content Initiatives Several local and international conferences held in 2007 were recorded and made available on Cure4Kids. These include: • SIOP Congress-International Society of Paediatric Oncology (Held in Mumbai, India) • Pediatrics in the 21st Century (In collaboration with Le Bonheur Children's Medical Center and University of Tennessee Health Science Center) • Retinoblastoma Conference-One World, One Vision (In collaboration with The Hamilton Eye Institute, The University of Tennessee Health Science Center) • St. Jude-PIDS Pediatric Infectious Diseases Research Conference (In collaboration with Pediatric Infectious Diseases Society) • Nursing Genomics Conference (in collaboration with Nursing Education, St. Jude Children's Research Hospital) • St. Jude Domestic Affiliate Annual RN/CRA Conference (In collaboration with St. Jude’s Domestic Affiliate Program ) • St. Jude Biomedical Symposium • St. Jude Hodgkin Lymphoma Symposium

The Cure4Kids Pediatric Nursing Oncology course has been completed and is now available online. This comprehensive course has over 14 modules with over 1,000 pages of nursing education content and related Cure4Kids nursing seminars. It has been designed specifically for international nurses. To date, the Cure4Kids Pediatric Oncology course has been accessed 12,455 times by 8,697 users. In 2007, this course was translated to Spanish. The Spanish version of the course has been accessed 2,881 times by 1,780 users. New courses have been added to Cure4Kids that allow users to take the course at their own pace. These include the following: • Oncology Nursing Review Sessions (in collaboration with Oncology Nursing SocietyMemphis Area Chapter) • Curso Corto de Ética en la Investigación del St. Jude Children’s Research Hospital (in Spanish) • Curso de Control de Infecciones del St. Jude Children Research Hospital (in Spanish) • Cure4Kids Curso de Enfermería Oncológica Pediátrica (in Spanish) Cure4Kids 2007 Annual Report

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In 2007, selected seminars were made available in podcast format and can be downloaded from Cure4Kids or iTunes.

The educational content on the Cure4Kids web site was accessed one million times in the first five years of its operation. This record was reached in March 2007 with 10,000 users from 155 countries. As of April 2008, Cure4Kids had 14,000 users from 160 countries and was accessed 1.7 million times. Cure4Kids - Total Number of Items Accessed 1800000 1600000 1400000

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Online Collaborations Cure4Kids online web conference rooms are used for educational meetings, clinical consultations, and program development. There are 190 groups that use Cure4Kids live web conference rooms, and these rooms were used 13,191 times in 2007. Some of the larger groups include the Masera-Oncopedia Rounds (103 international members), the Latin American Infection Control Network-Red (81 members), and the International Retinoblastoma Staging Group (70 members). Each group has an online private area for sharing documents, scheduling meetings, sending announcements, and managing projects.

On January 25, 2007 Cure4Kids provided a web cast simulcast transmission of the 2007 Retinoblastoma Conference-One World, One Vision held here at St. Jude. The web cast was attended by over 100 participants from China, the Philippines, Morocco, Jordan, Ecuador, Costa Rica, MĂŠxico, Guatemala, Honduras, Colombia, and the United States. The conference sessions were also recorded and released online on Cure4Kids. These have been viewed 8,923 times.

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On May 18, 2007, Cure4Kids hosted an international live meeting on dengue fever with experts from St. Jude, El Salvador, and Paraguay presenting important facts regarding the diagnosis and management of dengue in children and answering questions from participants. The presenters included Ana Rol贸n, MD (Paraguay), Ernesto Pleit茅s, MD (El Salvador), and Miguela Caniza, MD (St. Jude). There were 65 participants from 11 countries including Colombia (2), Costa Rica (1), El Salvador (33), Guatemala (4), Honduras (4), Nicaragua (3), Paraguay (3), Panama (4), Peru (1), Venezuela (3), and USA (7).

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High-Definition Telemedicine Cure4Kids staff supported the implementation of high-definition video equipment at St. Jude. Polycom Corporation has donated its latest high-definition teleconference equipment model UltimateHD™ to Medical Missions for Children (MMC) at St. Joseph's Children Hospital, New Jersey and St. Jude Children's Research Hospital (SJCRH). For many years, MMC and SJCRH/IOP have collaborated to broadcast medical information worldwide. From Polycom’s perspective, this is a significant opportunity for implementing their equipment for telemedicine. This is the first installation of high-definition equipment in hospitals. For SJCRH and MMC, it represents an opportunity to expand and improve our communication for patient care and research (domestic affiliates and national collaborative sites). We can now envisage projects (collaborative protocols) in diagnostic imaging and pathology, retinoblastoma, osteosarcoma and perhaps even brain tumors. The dedication ceremony that was held on March 22 was attended by Mr. Frank Brady, Chairman of MMC; Mr. Robert C. Hagerty, Chairman of Polycom; Dr. Joseph Mirro, Chief Medical Officer for St. Jude; Dr. Ching-Hon Pui, Chair Dept. of Oncology at St. Jude; and Dr. Raul Ribeiro, Director of the International Outreach Program at St. Jude. “The new technology represents a wonderful step forward for the St. Jude International Outreach Program,” said Raul Ribeiro, MD, the program’s director. “It will also enable us to disseminate high-quality educational content to our international partner sites.” “We’re on the forefront not only of medicine but of medical education,” said Joe Mirro, MD, the Chief Medical Officer for St. Jude.

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Community Outreach Cure4Kids for Kids, an educational web site to help elementary school children understand basic science and cancer, is still under development. The web site will contain age-appropriate educational materials in multiple languages including online interactive games, story books, and glossary terms. The site will not require children to register. Teachers can obtain additional instructional material such as lesson plans, quizzes, and tips to help them implement this content in their classroom. The initial content (scheduled to launch in Spring 2008) will come from the St. Jude Comprehensive Cancer Center community outreach program. This content was designed with three main objectives in mind—addressing common misconceptions about cancer, instilling healthy habits in children that could prevent the development of adult cancers, and increasing their interest in science. Hospital Sant Joan de DÊu in Barcelona, Spain is using the Cure4Kids live meeting rooms to provide pediatric education to parents across Spain. Parents attend meetings at local hospitals and schools. To date, over 186 people from Spain, Germany, and the Canary Islands have participated.

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POND POND4Kids (Pediatric Oncology Networked Database) is an online, multilingual clinical database developed by the St. Jude International Outreach Program for supporting international pediatric hematology/oncology treatment protocols. This tool allows uniform data collection to allow meaningful comparison of treatment protocols and outcomes between treatment centers. POND4Kids is available free to St. Jude partner sites. Currently in use in Costa Rica, the Dominican Republic, El Salvador, Guatemala, Honduras, Nicaragua, Mexico, Morocco, and Paraguay, this tool has been used to analyze clinical data on thousands of patients and provide advice to partner sites to improve the delivery of treatments. This initiative also supports the salary of data managers at international partner sites who enter data in POND4Kids. Weekly online conferences are held on Cure4Kids with data managers at international partner sites for education and analysis of data. POND4Kids is the only pediatric oncology database focused on supporting countries with limited resources by the exchange of information and experience between oncologists in diverse geographic regions who practice in a similar medical environment. Over 30 countries are currently using POND4Kids for analysis. In the first three years of operation (2004–2007), over 10,000 records have been added to POND4Kids. Records are being shared by disease type with disease experts for research analysis.

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External Collaborators Content Collaborators Cure4Kids has on-going collaborations for educational initiatives with the following organizations: • International Society of Paediatric Oncology (SIOP) • International Union Against Cancer (UICC) • International Atomic Energy Agency (IAEA) • Pediatric Infectious Diseases Society (PIDS) • Oncology Nursing Society (ONS) • End-of-Life Nursing Education Consortium (ELNEC) • Le Bonheur Children's Medical Center • Methodist University Hospital • The University of Tennessee Health Science Center (UT) • Medical Missions for Children (MMC) Dr. Yuri Quintana serves on an advisory board to the UICC Commons, and online community for UICC members. Dr. Ayda Nambayan serves on an advisory board for the ONS Institutes for Leadership, and servers the ELNEC international palliative care working group.

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Innovation Collaborators The Cure4Kids Innovation Network is an open, global, virtual community of researchers and practitioners who share innovations in e-learning, e-health, and informatics. The group meets online on Cure4Kids. Presentations are made by speakers from participating institutions and invited speakers. The purpose is to share innovations that will inspire new applications of tools and methodologies and be a catalyst that ignites new collaborations among the members. The Cure4Kids Innovation Group has over 100 participants from 30 universities and institutes as part of the group. In August 2007, Cure4Kids hosted a brainstorming workshop with over 60 participants from St. Jude and local universities to generate ideas for its five-year strategic plan.

Professional Society Collaborations Dr. Yuri Quintana is adjunct faculty member at the University of Victoria’s School of Health Information Science in Victoria, BC, Canada. Dr. Quintana chaired the telemedicine panel at the Univ. of Victoria’s Information Technology and Communications in Health (ITCH) Conference. Cure4Kids has active research collaborations with the University of Victoria, The FedEx Institute of Technology at the University of Memphis, and the Systems Design Engineering department at the University of Waterloo in Canada. Cure4Kids has participated in the Workforce eLearning Resource Network (WERN), a professional group funded by the US Department of Defense focused on the development of learning technologies.

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Cure4Kids Presentations and Publications January 2007: Dr. Ayda Nambayan, Cure4Kids Curriculum and Distance Learning Developer, presented Cure4Kids at the Makati Medical Center Nursing Leadership Meeting in Makati City, Manila. The Makati Medical Center sponsored the training of one of their nurses through the IOP Visiting Fellowship Program. The nurse will be responsible for the training of the nurses in the pediatric unit which will house several beds dedicated for pediatric oncology patients. February 2007: Dr. Yuri Quintana, Director, Education and Informatics, IOP, presented Cure4Kids at an invited session at the Information Technology and Communications in Health Conference, Victoria, BC, Canada. Dr. Quintana also chaired a panel session on telemedicine. July 2007: Dr. Yuri Quintana gave an invited lecture on Cure4Kids at the Harvard Center for Biomedical Informatics, Harvard Medical School, on July 26, 2007. August: 2007: Dr. Ayda Nambayan participated in the development of the ELNEC curriculum for international palliative care education. September, 2007: Dr. Ayda Nambayan presented Cure4Kids at the Memphis Area Oncology Nursing Society Chapter monthly meeting, Memphis, TN. Subsequently, a collaboration was established with the chapter and its president (Jeri Ashley MSN) to include a MAONS certification review session. This course is now on Cure4Kids. October 2007: On October 29, 2007, Dr. Ayda Nambayan and Dr. Yuri Quintana presented Cure4Kids to nurse executives from NCI Comprehensive Cancer Centers who visited St. Jude Children’s Research Hospital. October 2007: Dr. Quintana presented Cure4Kids at the Annual Conference of the American Association for Cancer Education (AACE) in Birmingham, Alabama. November 2007: Dr. Ayda Nambayan participated in the program committee for the Oncology Nursing Society Leadership Development Institute, Atlanta, GA and also made a presentation there. November 2007: Dr. Ayda Nambayan presented Cure4Kids at the St. Jude Domestic Affiliate Annual RN/CRA Conference. November 2007: Cure4Kids had a poster at the St. Jude Scientific Poster Session. The poster was filmed by a visiting NBC Today show crew. December 2007: Dr. Yuri Quintana presented Cure4Kids to representatives from the National Association of Children’s Hospitals and Related Institutions (NACHRI).

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Awards Cure4Kids has received several awards including the 2007 e-Healthcare Leadership Award from health industry leaders, the 2007 St. Jude Clinical Care Improvement award, and the 2008 Webby Honoree for outstanding Internet design. The St. Jude Clinical Care Improvement Award is given to the group that has significantly improved clinical infrastructure to support the mission of St. Jude Children’s Research Hospital. Cure4Kids.org received the Distinction Award in the Best Overall Internet Site Category of the 2007 eHealthcare Leadership Awards. There were over 1,000 entries from 200 organizations. Cure4Kids was selected as an official honoree for the health category at the 12th annual Webby Awards. The Webby Awards are the leading international awards that honor excellence on the Internet. The Webbys are presented by The International Academy of Digital Arts and Sciences, a 550-member body of leading Web experts, business leaders, luminaries, visionaries, and creative celebrities. Cure4Kids was selected from nearly 10,000 entries from all 50 states and more than 60 countries. Dr. Ayda Nambayan, Cure4Kids Curriculum and Distance Learning Developer, was awarded the 2008 Distinguished ELNEC-PEDS trainer award. Dr. Nambayan initiated the collaborations between Cure4Kids and the End-of-Life Nursing Education Consortium (ELNEC) that led to the development of the online ELNEC Pediatric Palliative Care course on Cure4Kids. The ELNEC Palliative Care content on Cure4Kids has been accessed 33,393 times. Dr. Ayda Nambayan is the 2008 recipient of the Oncology Nursing Society (ONS) Pearl Moore Making a Difference Award. The award recognizes her significant contributions to the oncology nursing profession at the local, regional, and international levels.

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Cure4Kids Core Team Members: Yuri Quintana, PhD - Director, Education and Informatics Ayda Nambayan, RN, DSN - Curriculum & Distance Learning Developer Richard O'Brien - Education Technologies Administrator Ana Shuler - Cure4Kids Member Services and Live Events Coordinator Aman Patel, Senior Programmer and Architect Jared Becksfort, MS, Web/Database Developer Jay Knight, Web/Database Developer Additional Support from: Marcia Chia, Carmen Hazan-Cohen, Raisa Ioffe, Odalis Richiez, Carmen Sandoval, MPA, Alicia Rodriguez, Jiangyu Sun, Dorothy Ogdon, Candace White, Shelton Robinson, Roger Cotton, Louis Kimery Content and Editorial IOP faculty and staff members: Guillermo Chantada, MD (Oncopedia Editor), Scott Howard, MD, Miguela Caniza, MD, Gaston Rivera, MD, Ching-Hon Pui, MD, Carlos Rodriguez-Galindo, MD, Sima Jeha, MD, John Sandlund, MD, Ibrahim Qaddoumi, MD, Jesse Jenkins, III, MD, Bhaskar Rao, MD, Sara Day, MSN, Nora Donahue, RN, BSN, Agusti Gasol, RN, Raul Ribeiro, MD, Rachel Nuss, MD, Monica Cypriano, MD, Michele Montgomery, MSN, Lilian Lim, MD, Mary Sewaya, MD, Mar Bellido, PhD, Elizabeth Walker Cure4Kids is developed by the International Outreach Program: Raul C. Ribeiro, MD, Director, International Outreach George Velez, MBA, CAAMA, FACHE, Administrative Director, International Outreach

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Appendix I: Location of Cure4Kids Users (May 1 2008) (top countries and states)

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Cure4Kids 2007 Annual Report