Sickle cell resources online; browsing the Internet

AORN Journal, March, 1999 by Dan Sjogren

In conjunction with the this month's Home Study Program, "Laparoscopic splenectomy in children with sickle cell disease," this month's column presents web sites that provide access to information about sickle cell treatment and research. The network of sickle cell researchers and health care providers is very interconnected, and the sponsoring organizations of the sites frequently work together to provide timely and consistent information to the public and health care professionals.

SICKLE CELL INFORMATION CENTER

Georgia Comprehensive Sickle Cell Center at Grady Health System, the Sickle Cell Foundation of Georgia, and Emory University School of Medicine Department of Pediatrics jointly supports the Sickle Cell Information Center at www.emory.edu/PEDS/SICKLE /index.htm. This site serves as a central resource on the Internet for sickle cell information for both clinicians and patients. Content areas include "What is Sickle Cell?", "Patients and Families," "Teachers and Employers," and more. The "Health Care Providers" section, (www.emory.edu/PEDS /SICKLE/toc.htm#provider) includes a variety of content and available Internet links for medical professionals. Problem-oriented clinical guidelines containing comprehensive details about the disease and symptoms, with direct links to protocols for disease or symptom management, are included. One section provides a review of sickle cell disease for clinicians, in addition to patient education materials and news about the latest sickle cell research. A slideshow-style tutorial about the disease can be viewed from this area of the site. In addition, many other links can be found at the site for medical professionals.

The "World Wide Resources" area of the site is solely dedicated to Internet links. Two separate sections provide links to clinics, physicians, hospitals, National Institutes of Health centers with sickle cell programs, and to the International Association of Sickle Cell Nurses and Physician's Assistants. Other specialized categories on the site include "Health Care Administrators," "Newborn Screening," "Blood Banks and Donors," "Pharmaceutical Companies," "News," and "Frequently Asked Questions." The layout of the site is easy to follow and understand.

PEDIATRIC RESOURCES

The Pediatric Sickle Cell Program at the State University of New York (SUNY) maintains a resource page for clinicians and patients at www.hscbklyn .edu/SUNY/Research/PSCP /smseelig.htm. The site advertises the services provided at SUNY-Health Center at Brooklyn by describing their approach to care and providing Internet links for more information. Of particular interest is the "Management and Therapy of Sickle Cell Disease" at www.hscbklyn.edu/SUNY /Research/PSCP/MGMTFRM .HTM. This is an online version of a book that is available to download from the National Heart, Lung, and Blood Institute at www.nhlbi.nih.gov/nhlbi/blood /sickle/prof/sick-m&t.htm. The book discusses advances and modifications in practices and clinical research related to sickle cell disease.

Harvard's Joint Center for Sickle Cell and Thalassemic Disorders (www.rics.bwh.harvard .edu/sickle) provides current information, including basic and clinical research, management, and new developments in the field. An overview of the disease (ie, history, hemoglobin basics, sickle syndrome definitions), management considerations (ie, hydroxyurea guidelines, acute chest syndrome, transient aplastic crisis, strokes), and a section with basic research and active clinical trials are provided on this well-organized web site.

RESEARCH ON SICKLE CELL DISEASE

The Statistics and Data Management Center at www.fpg .unc.edu/~sickle/index.htm collects and manages research data for hospitals and clinics known as the Comprehensive Sickle Cell Centers. Research project abstracts from each facility and news and updates from the sickle cell community are available. Conference information also is available on the site.

BROWSERS SERVE AS A GATEWAY

A browser is a gateway to the Internet. It is the program on a computer that allows you access to the Internet. There are many browsers available, and they all provide access to the same sources of information, but each has a slightly different style. If the Internet is like a remote library, a browser is like a branch library in the system. A site on the Internet is analogous to a book, and the search engine is analogous to a catalog system.

UPGRADES AND IMPROVEMENTS

Browser companies have created many successive versions of their browsers; each new version supposedly is better than the last, with slight differences. The location of some of the standard features changes slightly between versions. Be aware that the features discussed here are common to all browsers, but with slight variations. The features of the two main browsers, Netscape Communicator 4.5 and Microsoft's Internet Explorer 4.0 are discussed in this column.

USING A BROWSER

A series of buttons at the top of the browser window allow the user to perform various tasks. "Forward" and "Back" buttons allow the user to move back and forth between web sites that have been visited. This is helpful if you explore an area and want to return to the previous site, but you cannot recall the address. The "Back" button takes you back through all visited pages. Also, next to the "Address" or "Location" window, where the Internet address of the site being visited is displayed, you have access to a pull-down menu. A set number of previously visited sites is displayed and can be selected, allowing you to go back to a previously visited site.