SICKLE-CELL ANEMIA: A PATHFINDER

sickle cell ONE

Contents

Introduction and Scope	Subject Headings	Browsing Areas/Key Terms
Reference Sources	Books	Bibliographies
Manuals and Guides	Journal Articles	Internet Resources
Databases	Encyclopedias/Dictionaries	Media

Introduction and Scope

Sickle-cell anemia is a serious hereditary disease that affects the blood and that occurs mainly in people of African descent. The disease is also prevalent in India, the Middle East, the Mediterranean region, and throughout the African Diaspora. Sickle-cell anemia is caused by the homozygous inheritance (that is from both parents) of the hemoglobin S gene (Hb S; a variant type of hemoglobin, the protein in red blood cells that carries oxygen to the tissues of the body). Hb S is sensitive to deficiency of oxygen, and when the carrier red blood cells release their oxygen to the tissues and the oxygen concentration within those cells is reduced, Hb S, in contrast to normal hemoglobin (Hb A), becomes stacked in blood cells in filaments that twist in helical rods. These rods then cluster into parallel bundles that distort and elongate the cells, causing them to become rigid and assume a sickle shape. This phenomenon is to some extent reversible after the cells become oxygenated once more, but repeated sickling ultimately results in irreversible distortion of the red blood cells. The sickle-shaped cells become clogged in small blood vessels, causing obstruction of the microcirculation, which in turn results in damage to and destruction of various tissues. –Britannica Encyclopedia

The goal and scope of this pathfinder wants to address the difficulty for adults and children afflicted with sickle-cell anemia to find current information by revealing relevant resources to the understanding of this disease. Currently, an estimated one in every 12 people of African descent carries the sickle-cell trait, while about one in 400 people have sickle-cell anemia. If both parents have the sickle-cell trait, the chances are one in four that a child born to them will develop sickle-cell anemia. I have a relative with the disease. When excruciating pain takes over her body (called crises), she must stay in the hospital for days. Currently, there is no true devotion towards finding a cure for this disease. Even with the best health care available, sickle-cell patients are usually cared for through the cancer department of hospitals. Unfortunately, sickle-cell anemia is not a cancer; therefore, treatment usually requires the patient to wait out the pain or use drugs and treatments normally reserved for the treatment of cancer patients. With this pathfinder, students in high school, college, non-students, parents of children with the disease, teachers, and basic professionals will be able to use the University of South Florida’s (USF) library for access to information on this disease. Also, anyone interested in hereditary diseases, genetics, and pathology should find this page useful.

Subject Headings

Sickle cell TWO

Based on the Library of Congress classification, these subject headings are useful when searching terms relevant to sickle-cell anemia

UF	Anemia, Drepanocytic
	Drepanocytic anemia
	Meniscocytosis
	Sickle-cell disease
BT	Blood hyperviscosity syndrome
	Hemoglobinopathy
	Hemolytic anemia
NT
	Sickle-cell anemia in children
-Afro-Americans	Health and hygiene
-UF Blacks/African Americans, Africans-United States	Diseases
-Chemotherapy	Choose geographic region
-RT	Antisickling agents
-Diagnosis	Choose geographic region
-Law and Legislation	Choose geographic region
-BT	Medical laws and registration

Browsing Areas

These sections represent good browsing area for sickle-cell anemia with regards to the USF library call numbers

HE.20.3002-HE.20.4010	Federal documents
LC.33.10:82-9	Federal documents
Q11.55	Compiled papers
QR1, QZ50	Genetic/hereditary diseases
QZ4, QZ140	Pathology
RA448.5.N4	Race, health and hygiene
RA645.S53	Politics
RA778.B645	Women’s health
RB155.5	Genetic medicine
RC451	Afro-American health
RC641.7.S5	Sickle-cell anemia
RC 281.C4, RJ416.S53	Sickle-cell anemia in children
WH100	Blood disorders
616.1527	Audio visual

Key Terms

Knowing the definition to these key terms will help to understand various articles, journals, and other information

Amino Acid	Anemia	Bilirubin
Bone Marrow	Bone Marrow Transplantation	Chemotherapy
Globin	Heme	Gel electrophoresis
Hemoglobin A	Hemoglobin S	Hemoglobin
Iron loading	Jaundice	Hydroxyurea
Nucleic Acid	Red blood cell	Mutation
Sickle cell	Sickle cell test	Screening

Abbreviation Key: Library of Congress (LOC), University of South Florida (USF),

Reference Sources

Buyse, M. L. (1990). Birth defects encyclopedia: The comprehensive, systematic, illustrated reference source for the diagnosis, delineation, etiology, biodynamics, occurrence, prevention, and treatment of human anomalies of clinical relevance. Dover, MA: Center for Birth Defects Information Services. (pp. 135-137) Call number [REF QM 690.B57 1990]

Dulbecco, Renato. (Ed.). (1997). Encyclopedia of human biology (2^nd ed., v.8). San Diego: Academic Press. (pp. 1-20.) Call number [REF QP 11.E53 1997 v.8]

Kiple, K. (Ed.). (1993). The Cambridge world history of human disease. Cambridge: Cambridge University Press. (p. 1006). Call number [REF R131.C233 1993]

“Medicine and disease: an overview -- Changing concepts of health and disease -- Medical specialties and disease prevention -- Measuring health -- History of human disease in the world outside Asia -- History of human disease in Asia -- Geography of human disease -- Major human diseases of past and present.” [Publisher]

Mai, L., Owl, M. & Kersting, M. P. (Eds.). (2005). The Cambridge dictionary of human biology and evolution. New York: Cambridge University Press. (p. 486). Call number [REF QP 34.5.M24 2005]

“Packed with 13000 descriptions of terms, specimens, sites and names, this invaluable research and study tool covers a broad range of subjects including human biology, physical anthropology, primatology, physiology, genetics, paleontology and zoology. The volume also includes over 1000 word roots, taxonomies and reference tables for extinct, recent and extant primates, and illustrations of landmarks, bones and muscles. It is essential for students, researchers, and anyone with an interest in human biology or evolution.” [Publisher]

Olendorf, D., Jeryan, C., & Boyden, K. (2006). The Gale encyclopedia of medicine. Detroit, MI: Gale Research. Call number [RC41 .G35 2006 v.4]

“The Gale Encyclopedia of Medicine is a one-stop source for medical information on nearly 1,500 common medical disorders, conditions, tests, and treatments, including high profile diseases such as AIDS, Alzheimer’s disease, cancer, and heart attack. It uses language that laypersons can understand, so users are not confused by medical jargon. The Gale Encyclopedia of Medicine fills a gap between basic consumer health resources, such as single-volume family medical guides, and highly technical professional materials.” [Publisher]

Physician’s desk reference (PDR) 2008 (62 ed.) (2007). Montvale, New Jersey: Thomson Healthcare Inc. Call number [READY REF RS 75.P5 2008]

The function of the publisher is the compilation, organization, and distribution of this with the participation of various manufacturers and their drugs. The PDR contains Food and Drug Administration (FDA) approved labeling for drugs as well as prescription information provided by manufacturers for drugs historically marketed without FDA approval. Some dietary supplements and other products are also included. [Publisher]

Shannon, J. B. (2001). Ethnic diseases sourcebook. Detroit, MI: Omnigraphics. Call number [REF RA563.M56 E838 2001]

"Basic consumer health information for ethnic and racial minority groups in the United States, including general health indicators and behaviors, ethnic diseases, genetic testing, the impact of chronic diseases, women's health, mental health issues, and preventive health care services, along with a glossary and a listing of additional resources." [Publisher]

Walton, J. N., Beeson, P. B., Scott, R. B., Owen, S. G., & Rhodes, P. (1986). The Oxford companion to medicine. Oxford [Oxfordshire]: Oxford University Press. Call number [R121 .O88 1986 v.1, v.2]

Wynbrandt, J., & Ludman, M. D. (2000). The encyclopedia of genetic disorders and birth defects. New York: Facts on File. Call number [RB155.5 .W96 2000]

Books

Bloom, M. (1995). Understanding sickle cell disease. Understanding health and sickness series. Jackson: University Press of Mississippi. Call number [RC641.7.S5 B56 1995]

Braithwaite, R. L., & Taylor, S. E. (2001). Health issues in the Black community. The Jossey-Bass health series. San Francisco: Jossey-Bass. ISBN 0787952362 9780787952365

“Vigorous action must be directed to prevent disease, promote overall health, and deliver appropriate care within the African American population. In this thoroughly updated and revised edition of Health Issues in the Black Community the authors offer an in-depth examination of the most pressing health problems confronting the black community. Written by a stellar panel of scholars and practitioners in the field, this valuable resource examines such topics as chronic illnesses, the effect of violence, and health policy. Health Issues in the Black Community also contains the most current thinking on relevant health, delivery, lifestyle, and policy issues.” [Publisher]

Edelstein, S. J. (1986). The sickled cell: From myths to molecules. Cambridge, Mass: Harvard University Press. Call number [RC641.7.S5 E34 1986]

Gold, Susan. (2001). Sickle-cell disease. Berkeley Heights, New Jersey: Enslow. Call number [Juvenile Books-Nonfiction -- 616.1527G618s]

“Each book discusses a specific disease, usually illustrated through case studies of people with the disease. Formerly a Crestwood House series and now available as new books and revised editions from Enslow Publishers, Inc. Factual information and statistics make this series excellent for report writing.” [Publisher]

Gordon, M. A. (2000). Let's talk about sickle cell anemia. The let's talk library. New York: PowerKids Press. Call number [Electronic reproduction RC641.7.S5 (Available ONLINE at USF Net Library, Juvenile Literature)

“A simple introduction to sickle cell anemia, describing its symptoms, its effects on the body, and how to cope with this disease.” [Publisher]

Gunton, J. D., Shiryayev, A., & Pagan, D. L. (2007). Protein condensation: Kinetic pathways to crystallization and disease. Cambridge: Cambridge University Press. Call number [Circulating Collection -- QP551.G86 2007]

“The quest to understand the condensation of proteins from solutions is a rapidly evolving field. The purpose of this book is to bring to an interdisciplinary audience the state-of-the-art in current research. The book also discusses diseases that occur due to undesired protein condensation, an increasingly important subject. Examples include sickle cell anemia, cataracts and Alzheimer's disease. Current experimental and theoretical work on these diseases is discussed, which seeks understanding at a fundamental, molecular level, to prevent the undesired condensation from occurring. The book, containing color plate sections, is suitable for graduate students and academic researchers in physics, chemistry, structural biology, protein crystallography and medicine.” [Publisher]

Lessing, S., Vichinsky, E., & Mann, S. (1991). A parents' handbook for sickle cell disease. Part I, Birth to six years of age. [Berkeley, Calif.]: State of California Dept. of Health Services, Genetic Disease Branch. Call number [DE LA PARTE INST (FMHI)-Circulating Collection -- RJ416.S53P37 1991]

“This handbook answers basic questions, gives information on routine medical care for your child, health care at home, what to do when there is fever, pain and when to get help and other medical problems in early childhood associated with sickle-cell disease.” [Publisher]

Mesec, A. L., & Fraser, C. H. (1997). Serious illness in the classroom: An educator's resource. Englewood, Colo: Teacher Ideas Press. Call number [Circulating Collection -- LB3409.U5M47 1997]

Parker, James N. and Parker, Philip M. (2002). The 2002 official patient's sourcebook on sickle-cell anemia. San Diego, California: Icon Health Publications. Call number [Electronic reproduction RC641.7.S5 (Available ONLINE at USF Net Library)

“Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ, finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.” [Publisher]

Phelps, L. (1998). Health-related disorders in children and adolescents: A guidebook for understanding and educating. Washington: American Psychological Association. Call number [Circulating Collection LB3409.U5P488 1998]

Reed, W. L., Darity, W., & Roberson, N. L. (1993). Health and medical care of African-Americans. Westport, Conn: Auburn House. Call number [Circulating Collection -- RA448.5.N4R44 1993]

Savitt, Todd Lee. (2007). Race and medicine in nineteenth and early twentieth-century America. Kent, Ohio: Kent State University Press. Call number [RA448.5.N4S28 2007]

“This book gives a detailed history using information smothering and overlaying of Virginia slave children: a suggested explanation -- Filariasis (elephantiasis) in the United States -- Race, medicine, and the discovery of sickle cell anemia: introduction -- Herrick's 1910 case report of sickle cell anemia, Chicago, Illinois -- Washburn's 1911 case report of sickle cell anemia, Charlottesville, Virginia -- Sickle cell anemia: the invisible malady -- Black health on the plantation -- Medical experimentation and demonstration on blacks in the Old South.” [Publisher]

Smith, C. H., Miller, D. R., Baehner, R. L., & Miller, L. P. (1995). Blood diseases of infancy and childhood: In the tradition of C.H. Smith. St. Louis: Mosby-Year Book. Call number [SHIMBERG HEALTH SCIENCES Circulating Collection -- WS 300B655 1995]

“General topics / edited by Denis R. Miller -- Origin and development of blood cells and coagulation factors: maternal-fetal interactions / Denis R. Miller -- Normal blood values from birth through adolescence / Denis R. Miller -- Blood groups and blood component transfusion / Naomi L.C. Luban -- Red blood cells / edited by Denis R. Miller -- Anemias: general considerations / Denis R. Miller -- Erythropoiesis, hypoplastic anemia’s and disorders of heme synthesis / Denis R. Miller -- Iron metabolism and iron deficiency / John N. Lukens.” [Publisher]

Tapper, Melbourne. (1999). In the blood: sickle-cell anemia and the politics of race. Philadelphia: University of Pennsylvania Press. Call number [RA645.S53T37 1999].

“Although, it strikes individuals from a variety of backgrounds, sickle-cell anemia has been known throughout the twentieth century as the “black disease”. In the Blood looks at why this is, telling the story of the racialization of sickle-cell anemia in decades after its identification in 1910 to today.” [Publisher]

United States. (1993). Sickle cell disease in newborns and infants: A guide for parents. Rockville, MD (Executive Office Center, Suite 501, 2101 E. Jefferson St., Rockville 20852): U.S. Dept. of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research. Call number [U.S. Federal Documents Collection -- HE 20.6520: D 63/2]

Wailoo, Keith. (2001). Dying in the city of the blues: sickle cell anemia and the politics of race and health. Chapel Hill: University of North Carolina Press. Call number [RA645.S53W35 2001]

“In order to understand the health care system for African Americans that emerged in Memphis in the early twentieth century, we must first understand the city itself. Who were the people that built and maintained that system? What kind of political machinations shaped their institutions? How did their economic interests and their racial agendas inform their perceptions of health and disease?” [Publisher]

Wailoo, Keith and Pemberton, Stephen. (2006). The troubled dream of genetic medicine: ethnicity and innovation in Tay-Sachs, cystic fibrosis, and sickle cell disease. Baltimore, Maryland: John Hopkins University. Call number [RB155.5.W35 2006]

“Ethnic symbols in conflicted times -- Eradicating a "Jewish gene": promises and pitfalls in the fight against Tay-Sachs disease -- Risky business in white America: gene therapy and other ventures in the treatment of cystic fibrosis -- A perilous lottery for the Black family: sickle cells, social justice, and the new therapeutic gamble -- Dreams amid diversity.” [Publisher]

White, E. C. (1990). The Black women's health book: Speaking for ourselves. Seattle, Wash: Seal Press. Call number [Tampa Circulating Collection -- RA778.B645 1990]

Bibliographies

Parker, James N. and Parker, Philip M. (2002). The 2002 official patient's sourcebook on sickle-cell anemia. San Diego, California: Icon Health Publications. Call number [Electronic reproduction RC641.7.S5 (Available ONLINE at USF Net Library)

“Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.” [Publisher]

Patrias, Karen & Gaston, Marilyn. (1987?). Sickle cell disease and other hemoglobinopathies in the newborn, January 1980 through February 1987: 199 citations. United States: National Library of Medicine. Call number [U.S. Federal Documents Collection -- HE 20.3614/2:87-1]

Yesley, Michael S. (1993). Bibliography of ethical legal & social implications of the Human Genome Project. Washington, D.C.: U.S. Dept. of Energy, Office of Energy Research; [Springfield, VA: Available from National Technical Information Service]. Call number [U.S. Federal Documents Collection-Microform Collection -- E 1.19:0591]

Manuals and Guides

Boyiadzis, Michael M. [et al.] (2007). Hematology-oncology therapy. New York: McGraw-Hill, Medical Publication Division [Manual] Call Number [SHIMBERG HEALTH SCIENCES Circulating Collection -- QZ 200H487 2007]

“The first manual to combine practical clinical information for both hematology and oncology. This resource provides a definitive focus on the often confusing combined practice of hematology and oncology. Covers all therapy induced complications and disorders as well as chemotherapy and supportive care regimens and comprehensive coverage of all drugs used in treatment.”[Publisher]

Brown, Ronald T. (2006) Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease: A Bio-psychosocial. Oxford: Oxford University Press. Call Number [Electronic reproduction RC281.C4 (Available ONLINE through USF Net Library)]

“As advances in health care have prolonged and improved the quality of life of children with chronic illnesses such as sickle cell disease (SCD), psychologists have sought to understand the impact of the illnesses on children and their families and to formulate effective interventions to enhance adaptation. These efforts have been informed by a bio-psychosocial conceptual approach such that the biomedical, psychological, and social-ecological processes associated with successful adaptation and effective interventions have been explored (Thompson & Gustafson, 1996). Moreover, it has been recognized that chronic childhood illness occurs within the ongoing context of the child’s cognitive and socio-emotional development.” [Publisher]

Lessing, S., Vichinsky, E., & Mann, S. (1991). A parents' handbook for sickle cell disease. Part I, Birth to six years of age. [Berkeley, Calif.]: State of California Dept. of Health Services, Genetic Disease Branch. Call number [DE LA PARTE INST (FMHI)-Circulating Collection -- RJ416.S53P37 1991]

Mesec, A. L., & Fraser, C. H. (1997). Serious illness in the classroom: An educator's resource. Englewood, Colo: Teacher Ideas Press. Call number [Circulating Collection -- LB3409.U5M47 1997]

Journal Articles

Children's Hospital doctor pioneers sickle cell cure. Nov 8, 2008. The Pittsburgh Tribune-Review (Pittsburgh, PA). General OneFile via Gale: http://find.galegroup.com/itx/start.do?prodId=ITOF

“Young patients with advanced sickle cell disease have their first real shot at a safe and effective cure, in large part because of research being done by a doctor at Children's Hospital of Pittsburgh. An estimated 50,000 Americans have the disease in which their red blood cells are crescent-shaped rather than round. That means the cells get caught up in the body, causing problems ranging from excruciating pain to organ damage. Children with the disease have life expectancies 20 to 30 years shorter than healthy children. Patients can undergo a bone-marrow transplant -- but that treatment can be riskier and more painful than the disease.” [Publisher]

ERYtech Pharma Presents a New Advance in the Treatment of Sickle Cell Anaemia. Nov 25, 2008. Business Wire. General OneFile via Gale: http://find.galegroup.com/itx/start.do?prodId=ITOF

“ERYtech Pharma has been chosen to present the first pre-clinical results obtained with its product GR-ARA1 on sickle cell anemia during the 50th annual congress of the American Society of Hematology (ASH), to be held in San Francisco (USA) from 6 to 9 December 2008.” [Publisher]

Investigators at Sultan Qaboos University zero in on sickle cell anemia. Nov 20, 2008. Blood Weekly, p.76. General OneFile via Gale: http://find.galegroup.com/itx/start.do?prodId=ITOF

“In this recent article published in the American Journal of Ophthalmology, scientists in Muscat, Oman conducted a study "To determine the role of hematological and genetic factors in the development of orbital infarction in sickle disease. Retrospective, non-comparative case series." The researchers concluded: "Patients with the Benin haplotype are more likely to develop orbital infarction during vaso-occlusive crises." [Publisher]

Naina HV & Harris S. (2008). Hydroxyurea for sickle cell anemia. The New England Journal of Medicine. 359 (1), 98-9.

National Heart, Lung, and Blood Institute. (1999). The management of sickle cell disease. NIH publication, no. 02-0117. [Bethesda, Md.]: National Institutes of Health, National Heart, Lung, and Blood Institute, Division of Blood Diseases and Resources. http://www.nhlbi.nih.gov/health/prof/blood/sickle/scmngt.pdf.

United States. (1993). Sickle cell disease: Screening, diagnosis, management, and counseling in newborns and infants. Clinical practice guideline, no. 6. Rockville, Md: U.S. Dept. of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research.

“Historically, sickle cell anemia, the most common form of sickle cell disease has been associated with high mortality in early childhood due to overwhelming bacterial infections, splenic sequestration crisis, and the acute chest syndrome. Over the past 20 years, it has been recognized that comprehensive medical care could reduce morbidity and mortality in children with sickle cell anemia. National Institutes of Health Consensus Conference on Newborn Screening concluded that screening could reduce morbidity and mortality, provided screening was linked to the provision of health care services.”[Publisher]

Weiner, K. E. (2001). Social support, body image, and psychological adjustment in children and adolescents with sickle cell disease. Thesis (Ph. D.)--University of South Florida, 2001. Call number [USF SPECIAL COLLECTIONS-Tampa USF Thesis and Dissertation Collection -- LD1801.F6p2001 W45 or Circulating Collection -- BF121.Z9W45 2001]

“This thesis paper addresses the social support, body image, and psychological adjustment in children and adolescents with sickle cell disease.” [Publisher]

Internet Resources

ASSOCIATIONS

American Pain Foundation 201 North Charles Street Suite 710, Baltimore MD 20210 TF: 1-888-615-PAIN (http://www.painfoundation.org/)

“Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c) 3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating removing barriers and increasing access to effective pain management.” [Publisher]

National Pain Foundation 300 E Hampden Avenue, Suite 100 Englewood, CO 80113 (www.nationalpainfoundation.org)

“The National Pain Foundation, a non-profit 501(c) (3) organization, was established in 1998 to advance functional recovery of persons in pain through information, education and support. The NPF is built on the belief that early intervention of pain conditions can positively change the direction of a person's life. The organization was created to serve the 75 million Americans living with chronic pain. The NPF recognizes that pain is real. It is a disease in and of itself that needs to be diagnosed and managed as comprehensively as any other disease. Our goal is to empower patients by helping them become actively involved in the design of their treatment plan, exploring both traditional and complementary approaches to pain management.” [Publisher]

Sickle Cell Anemia Association, American 10300 Carnegie Avenue, Cleveland OH 44106 Ph. 216-229-8600 Fax. 216-229-4500 (www.ascaa.org)

“The American Sickle Cell Anemia Association (ASCAA) is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling and supportive services to individuals and families at-risk for Sickle-Cell Disease. Since its inception, the organization has tested approximately 125,000 at-risk individuals and has been a repository of statistical, case information, and data beneficial to patients, affected family members and the medical establishment both locally and globally.” [Publisher]

Sickle Cell Disease Association of America 200 Corporate Pointe Suite 495, Culver City CA 90230 Ph. 310-216-6363 Fax. 310-215-3722 TF: 800-421-8453 (www.sicklecelldisease.org)

“Through the years the Association has provided effective leadership in positioning sickle cell disease and its related problems as a major public health care concern and, indeed a universal problem. This page on the Web Site will present periodic insights into SCDAA historical footnotes that have positioned sickle cell disease as a major public health concern and indeed, a Global health challenge. This site also contains information for each state sickle-cell organization with links to various resources.” [Publisher]

The Sickle Cell Information Center: The Georgia Comprehensive Sickle Cell at Grady Health Center: The Sickle Cell Foundation of Georgia, Inc. Emory University School of Medicine, Department of Pediatrics: Morehouse College School of Medicine and the Aflac Cancer Center and Blood Disorders of Children’s Healthcare of Atlanta. PO Box 109, Grady Memorial Hospital, 80 Jesse Hill Jr. Drive SE, Atlanta, GA 30303 Email Address - aplatt@emory.edu Ph. 404-616-3572 Fax 404-616-5998 (http://www.scinfo.org/index.htm)

“The Georgia Comprehensive Sickle Cell Center at Grady Health System is the world’s first 24 hour comprehensive primary care clinic for patients with sickle cell syndromes. The center is located on the ground floor within the new clinic wing of the Grady Hospital building at 80 Jesse Hill Jr. Drive (formerly Butler Street) in Atlanta. The clinic has exam areas, observation rooms, a waiting room, a multimedia teaching center, and office space for the center team of physicians, nurses, physician assistants, nurse practitioners, clinic assistants, social workers, psychologists, secretarial support and a psychiatric clinical nurse specialist. The mission of the center is to provide preventative comprehensive primary care to the sickle cell population in North West Georgia. 24 hour emergency care is available to non-pregnant, non-trauma, adults over age 16. Patients under 16 are seen in the Hughes Spaulding Children’s Hospital emergency facility directly across the street.” [Publisher]

GENERAL

Health Power for Minorities 3020 Glenwood Road Brooklyn, NY 11210 Tel: (718) 434-8103 Fax: (718) 434-8162 (www.healthpowerforminorities.org), (http://www.healthpowerforminorities.org/major/sickle.cfm)

“The mission of Health Power for Minorities (Health Power) is to improve the health of multicultural populations, and thus the health of society as a whole. Our mission is pursued through: production and wide dissemination of authoritative, user friendly, culturally relevant and credible health related information; health promotion in communities of color, and among others in a position to have a positive impact on their physical, mental and spiritual health; provision of consultative services for capacity-building, including the development and enhancement of culturally relevant programs, services and activities; and partnering and collaborating with the public, non-profit and private sectors in planning, implementing and operating customized strategies and programs for disease prevention, early detection and control.” [Publisher]

Sickle-cell Kids. Org 740 Drewy Street Atlanta, GA 30306 Tel: Cynthia Gentry 404-879-0969 (www.sicklekids.org)

“Sickle cell Kids.Org is a fun, educational web site for kids with Sickle Cell Disease (and their families and friends, too.) We want to include your art, stories and questions on the web site. Think of what you would like to share with other children around the world who have sickle cell disease, too. Art Work: We would like to see pictures you have made that are about you and sickle cell disease. They can be pictures of you triumphing in your life or even pictures that show how you feel when you are in pain. They can be of you and your family or maybe you and your best friend doing something fun.” [Publisher] Macromedia Flash Player 5 needed to navigate the site.

Your genes, your health: A multi-media guide to genetic disorders (http://www.yourgenesyourhealth.org/sickle/whatisit.htm) Dolan DNA Learning Center (http://www.dnalc.org) Cold Spring Harbor Laboratory (http://www.cshl.edu/)

“The mission of the Dolan DNA Learning Center is to prepare students and families to thrive in the gene age. We envision a day when all elementary students are exposed to principles of genetics and disease risk; when all high school students have the opportunity to do hands-on experiments with DNA; and when all families have access to genetic information they need to make informed health care choices. The Dolan DNA Learning Center (DNALC) is the world's first science center devoted entirely to genetics education and is an operating unit of Cold Spring Harbor Laboratory, an important center for molecular genetics research. The DNALC extends the Laboratory's traditional research and postgraduate education mission to the college, precollege, and public levels.”[Publisher]

“Cold Spring Harbor Laboratory (CSHL) is a private, non-profit basic research and educational institution. Under the leadership of its President, Dr. Bruce Stillman, a member of the National Academy of Sciences and a Fellow of the Royal Society (London), over 400 scientists conduct groundbreaking research in cancer, neurobiology, plant genetics and bioinformatics. Cold Spring Harbor Laboratory is one of sixty-three institutions supported by the Cancer Centers Program of the National Cancer Institute (NCI) and has been an NCI-designated cancer center since 1987. The Laboratory also operates the Dolan DNA Learning Center in the village of Cold Spring Harbor, which offers laboratory workshops to science teachers, students, and other groups across the nation.”[Publisher]

GOVERNMENT

Department of Health and Human Services: Centers for Disease Control and Prevention: National Center on Birth Defects and Developmental Disabilities 1600 Clifton Rd, Atlanta, GA 30333, U.S.A
Public Inquiries: 1-800-CDC-INFO (232-4636); 1-888-232-6348 (TTY), 24 Hours/Every Day - cdcinfo@cdc.gov

“The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living. Our work includes identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.” [Publisher]

National Council on Disability 1331 F Street, NW, Suite 850 Washington, DC 20004 Ph. Voice: 202-272-2004 TTY: 202-272-2074 Fax: 202-272-2022 (www.ncd.gov)

“NCD is an independent federal agency composed of members appointed by the President of the United States, by and with the advice and consent of the U.S. Senate. NCD provides advice to the President, Congress, and executive branch agencies to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” [Publisher]

United States Department of Health and Human Services: National Institutes of Health (NIH): National Heart Lung and Blood Institute (NHLBI) (http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhatIs.html)

“The NHLBI developed the Diseases and Conditions Index (DCI) for patients and the public. The DCI contains plain-language health information about diseases, conditions, tests, and procedures related to the heart, lungs, blood, and sleep. We continue to add new information to the DCI. When complete, the DCI will contain information on more than 300 diseases, conditions, tests, and procedures. Registered users will receive e-mail notices when new information is added. The DCI provides users with three ways to find information: Search A to Z index Browse by category (heart, lung, blood, and sleep). The disease and condition articles describe the topic and its causes, risk factors, and symptoms. These articles also discuss how the disease or condition is diagnosed, treated, and managed. The test and procedure articles describe the topic, which may need the test or procedure, and what to expect before, during, and after. These articles also discuss what the results of the test or procedure may show and whether the test or procedure has risks.” [Publisher]

United States Department of Labor: Office of Disability Employment Policy 200 Constitution Ave., NW Washington DC 20210 Ph. Voice 1-866-ODEP-DOL (633-7365) TTY 1-877-889-5627 (http://www.dol.gov/odep/)

“The Office of Disability Employment Policy (ODEP) was authorized by Congress in the Department of Labor's FY 2001 appropriation. Recognizing the need for a national policy to ensure that people with disabilities are fully integrated into the 21st Century workforce, the Secretary of Labor Elaine L. Chao delegated authority and assigned responsibility to the Assistant Secretary for Disability Employment Policy. ODEP is a sub-cabinet level policy agency in the Department of Labor. Its mission is to provide national leadership on disability employment policy by developing and influencing the use of evidence-based disability employment policies and practices, building collaborative partnerships, and delivering authoritative and credible data on employment of people with disabilities. Its vision remains to provide a world in which people with disabilities have unlimited employment opportunities.” [Publisher]

Databases

Physician’s Desk Reference (www.PDR.net)

Although, PDR.net is a web portal designed specifically for healthcare professionals, provides a wealth of clinical information, including full drug and disease monographs, specialty-specific resource centers, patient education, clinical news, and conference information. PDR.net gives prescribers online access to authoritative, evidence-based information they need to support or confirm diagnosis and treatment decisions. Not currently offered through the USF database, PDR.net is still accessible through a limited free-trial membership.

United States National Library of Medicine: National Institutes of Health Library Catalog and Services, IndexCat (http://www.nlm.nih.gov/libserv.html)

“The Index-Catalogue of the Library of the Surgeon-General’s Office (Index-Catalogue)* is a multi-part printed bibliography or list of items in the Library of the Surgeon-General’s Office, U.S. Army. It contains material dated from the 1400s through 1950 and is an important resource for researchers in the history of medicine, history of science, and for clinical research. The scope of Index-Catalogue extends beyond medicine and includes, for example, the basic sciences, scientific research, military medicine, public health, and hospital administration. Language coverage is international with citations in European and Slavic languages, Greek script, and Romanized Chinese and Japanese titles - some with English translations. The catalogue covers a wide assortment of materials including: books, journal articles, dissertations, pamphlets, reports, newspaper clippings, case studies, obituary notices, letters, portraits, as well as rare books and manuscripts.” [Publisher]

United States National Library of Medicine: National Institutes of Health Library Catalog and Services, MedlinePlus (http://medlineplus.gov/)

“MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.” [Publisher]

Encyclopedias/Dictionaries

Dulbecco, Renato. (Ed.). (1997). Encyclopedia of human biology (2^nd ed., v.8). San Diego: Academic Press. (pp. 1-20.) Call number [REF QP 11.E53 1997 v.8]

Mai, L., Owl, M. & Kersting, M. P. (Eds.). (2005). The Cambridge dictionary of human biology and evolution. New York: Cambridge University Press. (p. 486). Call number [REF QP 34.5.M24 2005]

The New encyclopaedia Britannica (v. 10). (2002). Chicago: Encyclopaedia Britannica, Inc. (p. 780) Call Number [REF AE 5.E363 2002 V.10]

“The twelve volumes of the MICROPAEDIA contain tens of thousands of shorter articles on specific persons, places, things, and ideas, arranged in alphabetical order. It can be used as an information source on its own and function as support for longer articles in the MICROPAEDIA.” [Publisher]

Olendorf, D., Jeryan, C., & Boyden, K. (2006). The Gale encyclopedia of medicine. Detroit, MI: Gale Research. Call number [RC41 .G35 2006 v.4]

Sadler, M. J., Strain, J. J., & Caballero, B. (1999). Encyclopedia of human nutrition. San Diego: Academic Press. Call number [REF QP 141.E526 1999 v.1]

“Governments are realizing more and more the role that nutrition plays in the prevention of disease and the maintenance of good health, and the need to develop a nutrition policy that is integrated with polices for food production.” [Publisher]

Wynbrandt, J., & Ludman, M. D. (2000). The encyclopedia of genetic disorders and birth defects. New York: Facts on File. Call number [RB155.5 .W96 2000]

Media

RealPlayer Video

This nearly 60-minute video on Sickle Cell Anemia by Health Choices and Emory University provides much more detailed information about Sickle Cell Anemia. NOTE: The video requires the use of Real Player for viewing.

Videocassette

Suzuki, D. T. (1981). Sickle cell anemia. New York, N.Y.: Filmmakers Library. Call number [USF MEDIA RESOURCES-Tampa Videocassette - On-Site Storage -- 616.1527Si12]

“Cinemicrography contrasts normal red blood cells with sickle-shaped ones and documents the actual sickling of the cells. Canadian TV personality David Suzuki describes the causes and effects of the disease. Conversations with a family with five afflicted children exhibit the grim realities of sickle-cell anemia.” [Publisher]

Page created and designed by Christa Smith

School of Library Information Science

University of South Florida, Tampa, Florida

Created Fall 2008