Ebola outbreak response: the role of information resources and the National Library of Medicine.

The US National Library of Medicine (NLM) offers Internet-based, no-cost resources useful for responding to the 2014 West Africa Ebola outbreak. Resources for health professionals, planners, responders, and researchers include PubMed, Disaster Lit, the Web page "Ebola Outbreak 2014: Information Resources," and the Virus Variation database of sequences for Ebolavirus. In cooperation with participating publishers, NLM offers free access to full-text articles from over 650 biomedical journals and 4000 online reference books through the Emergency Access Initiative. At the start of a prolonged disaster event or disease outbreak, the documents and information of most immediate use may not be in the peer-reviewed biomedical journal literature. To maintain current awareness may require using any of the following: news outlets; social media; preliminary online data, maps, and situation reports; and documents published by nongovernmental organizations, international associations, and government agencies. Similar to the pattern of interest shown in the news and social media, use of NLM Ebola-related resources is also increasing since the start of the outbreak was first reported in March 2014.

National Library of Medicine Disaster Information Management Research Center: Achieving the vision, 2010-2013.

From 2010 to 2013, the National Library of Medicine (NLM) Disaster Information Management Research Center (DIMRC) continued to build its programs and services on the foundation laid in its starting years, 2008-2010. Prior to 2008, NLM had a long history of providing health information, training, and tools in response to disasters. Aware of this legacy, the NLM long range plan (Charting a Course for the 21st Century: NLM's Long Range Plan 2006-2016) called for creation of a center to show "a strong commitment to disaster remediation and to provide a platform for demonstrating how libraries and librarians can be part of the solution to this national problem". NLM is continuing efforts to ensure that medical libraries have plans for the continuity of their operations, librarians are trained to understand their roles in preparedness and response, online disaster health information resources are available for many audiences and in multiple formats, and research is conducted on tools to enhance the exchange of critical information during and following disasters. This paper describes the 2010-2013 goals and activities of DIMRC and its future plans.

National Library of Medicine Disaster Information Management Research Center: Establishment and growth, 2008-2010.

In 2008, the National Library of Medicine (NLM) established the Disaster Information Management Research Center (DIMRC). Prior to 2008, NLM had a long history of involvement in providing health information for disaster management. Aware of this legacy and moved by the catastrophic aftermath of Hurricane Katrina, the NLM long range plan (Charting a Course for the 21st Century: NLM's Long Range Plan 2006-2016) called for creation of a center to show "a strong commitment to disaster remediation and to provide a platform for demonstrating how libraries and librarians can be part of the solution to this national problem". NLM was urged to "ensure continuous access to health information and effective use of libraries and librarians when disasters occur". In response to this charge, NLM has undertaken substantial efforts to ensure that medical libraries have plans for the continuity of their operations, librarians are trained to understand their roles in preparedness and response, online disaster health information resources are available for many audiences and in multiple formats, and research is conducted on tools to enhance the exchange of critical information during and following disasters. This paper documents the history, goals, initiatives, accomplishments and future plans of the Center.

Characterization of the zebrafish T cell receptor beta locus.

Zebrafish (Danio rerio) has become an increasingly important model for immunological study. Its immune system is remarkably similar to that of mammals and includes both the adaptive and innate branches. Zebrafish T cells express functional T cell receptors (TCR), and all four TCR loci are present within the genome. Using 5'-rapid amplification of cDNA ends, we cloned and sequenced zebrafish TCRbeta transcripts. TCRbeta VDJ coding joints demonstrate conservation of mechanisms used by other vertebrate species to increase junctional diversity. Using the sequences obtained, along with previously published data, we comprehensively annotated the zebrafish TCRbeta locus. Overall, organization of the locus resembles that seen in mammals. There are 51 V segments, a single D segment, 27 Jbeta1 segments, a single Jbeta2 segment, and two constant regions. This description of the zebrafish TCRbeta locus has the potential to enhance immunological research in zebrafish and further our understanding of mammalian TCR repertoire generation.

Unusual sites of extraskeletal metastases of Ewing sarcoma after allogeneic hematopoietic stem cell transplantation.

Allogeneic stem cell transplantation (SCT) for solid tumors remains under investigation. We report a case of extended disease stability after a nonmyeloablative peripheral blood SCT for metastatic, refractory Ewing sarcoma. Of note, the patient developed metastatic disease to 2 unusual sites-the brain and small intestine. The allogeneic SCT environment may alter typical metastatic patterns, and may represent an ideal platform to manipulate and enhance the antitumor immune response. Further clinical trials are needed to evaluate the role for allogeneic SCT for this disease.

Web evaluation at the US National Institutes of Health: use of the American Customer Satisfaction Index online customer survey.

BACKGROUND: The National Institutes of Health (NIH), US Department of Health and Human Services (HHS), realized the need to better understand its Web users in order to help assure that websites are user friendly and well designed for effective information dissemination. A trans-NIH group proposed a trans-NIH project to implement an online customer survey, known as the American Customer Satisfaction Index (ACSI) survey, on a large number of NIH websites-the first "enterprise-wide" ACSI application, and probably the largest enterprise Web evaluation of any kind, in the US government. The proposal was funded by the NIH Evaluation Set-Aside Program for two years at a cost of US $1.5 million (US $1.275 million for survey licenses for 60 websites at US $18000 per website; US $225,000 for a project evaluation contractor). OBJECTIVE: The overall project objectives were to assess the value added to the participating NIH websites of using the ACSI online survey, identify any NIH-wide benefits (and limitations) of the ACSI, ascertain any new understanding about the NIH Web presence based on ACSI survey results, and evaluate the effectiveness of a trans-NIH approach to Web evaluation. This was not an experimental study and was not intended to evaluate the ACSI survey methodology, per se, or the impacts of its use on customer satisfaction with NIH websites. METHODS: The evaluation methodology included baseline pre-project websites profiles; before and after email surveys of participating website teams; interviews with a representative cross-section of website staff; observations of debriefing meetings with website teams; observations at quarterly trans-NIH Web staff meetings and biweekly trans-NIH leadership team meetings; and review and analysis of secondary data. RESULTS: Of the original 60 NIH websites signed up, 55 implemented the ACSI survey, 42 generated sufficient data for formal reporting of survey results for their sites, and 51 completed the final project survey. A broad cross-section of websites participated, and a majority reported significant benefits and new knowledge gained from the ACSI survey results. NIH websites as a group scored consistently higher on overall customer satisfaction relative to US government-wide and private sector benchmarks. CONCLUSIONS: Overall, the enterprise-wide experiment was successful. On the level of individual websites, the project confirmed the value of online customer surveys as a Web evaluation method. The evaluation results indicated that successful use of the ACSI, whether site-by-site or enterprise-wide, depends in large part on strong staff and management support and adequate funding and time for the use of such evaluative methods. In the age of Web-based e-government, a broad commitment to Web evaluation may well be needed. This commitment would help assure that the potential of the Web and other information technologies to improve customer and citizen satisfaction is fully realized.

Sibling stem cell donor experiences at a single institution.

Allogeneic bone marrow (BM) and cytokine mobilized peripheral blood stem cell (PBSC) transplantation can be curative for patients with malignant and nonmalignant hematologic diseases. Siblings are most often selected as a donor match; however, research on sibling donors is limited and has focused primarily on conventional BM donors. This exploratory study describes the experiences of PBSC sibling donors at a single institution. Through retrospective interviews, 14 sibling donors shared their perceived needs and concerns before and after their stem cell collection. Donors identified fears about the donation procedure, and expressed the need for more information about transplant outcome and complications. The inclusion of the sibling donors themselves, rather than the report of their parents or health-care providers and the qualitative nature of the structured design allowed sibling donors to describe their concerns and thoughts without being restrained by the beliefs of the participant's parents, researcher or sibling's medical team. Suggestions for visual educational tools, psychosocial interventions and future research are provided.