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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.

Displaying records 1 through 6 (6 total).

National Heart, Lung, and Blood Institute Health Information Center. 2012. Sickle cell disease research and care. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center,

Annotation: This website provides an overview of sickle cell disease and describes the research conducted by the Heart, Lung, and Blood Institute (NHLBI) to improvement treatment and reduce the risks of serious complications. The site describes how ongoing research has led to better health outcome but emphasizes that patients and health care providers still need to be educated about current advances in diagnosis and treatment. Clinical trials, breakthrough therapies, and areas for future research are also discussed. Links to NHLBI research findings and sickle cell annual meetings are included.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: [email protected] Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website.

Keywords: Blood and lymphatic diseases, Federal agencies, Federal programs, Research, Sickle cell disease

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell disease. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to frequently asked questions about sickle cell disease. It explains what this blood disorder is and what causes it; describes who is affected by it; and explains the types of health problems that it causes. It also explains how the disease is treated and discusses whether or not there is a cure.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Consumer education materials, Sickle cell disease

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell disease and pregnancy. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to questions about sickle cell disease (SCD) and pregnancy. It explains what causes sickle cell disease and sickle cell trait (SCT) and discusses whether individuals with either of these should see a genetic counselor and what they should do if they plan on having a baby. It describes genetic tests that can be conducted during pregnancy to determine whether or not the baby will have SCD or SCT and describes how pregnant women with SCD or SCT should be monitored to help ensure a healthy pregnancy.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Pregnancy, Pregnancy outcome, Sickle cell disease

National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders. [2011]. What you should know about sickle cell trait. Atlanta, GA: National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders, 2 pp.

Annotation: This fact sheet provides answers to frequently asked questions about sickle cell trait. It explains the differences between sickle cell trait and sickle cell disease; explains how someone acquires the trait and who is affected by it; explains the health complications that may result from having the trait; and describes the blood test that can determine whether or not someone has the trait. The fact sheet also provides statistics on the chances that a baby will acquire sickle cell trait, based on whether or not one or both parents have either the trait or the disease.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/ncbddd Available from the website.

Keywords: Blood and lymphatic diseases, Consumer education materials, Screening tests, Sickle cell disease, Sickle cell trait

National Heart, Lung, and Blood Institute Health Information Center. 2010. A century of progress: Milestones in sickle cell disease research and care. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center, 2 pp.

Annotation: This brochure provides an overview of sickle cell disease, explaining what it is and how research has led to advances in its treatment during the past century. The brochure also describes how the National Heart, Lung, and Blood Institute -- part of the National Institutes of Health -- has not only funded sickle cell research but has conducted large clinical trials and sponsored workshops and meetings to guide the research agenda. The back of the brochure is a time line displaying events related to sickle cell disease beginning in 1910 when it was first described by Chicago Physician James B. Herrick.

Contact: National Heart, Lung, and Blood Institute Health Information Center, P.O. Box 30105, Bethesda, MD 20824-0105, Telephone: (301) 592-8573 Secondary Telephone: (240) 629-3255 Fax: (301) 592-8563 E-mail: [email protected] Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website.

Keywords: Blood and lymphatic disease, Genetics, History, Medical research, Sickle cell disease

Bottom K, McLean B. 2003. Pediatric/Adolescent Blood Disorders Program: Final report. Asheville, NC: Mission St. Joseph's Health System, 23 pp.

Annotation: This report describes a project conducted from 1999 to 2003 in Western North Carolina to address the unmet medical and psychological needs of the families living in rural areas of the state and to provide services within the families' communities. The program sought to improve the health of children with sickle cell disease and other inherited blood disorders, increase knowledge and understanding of sickle cell disease and other inherited blood disorders in Western North Carolina, and ensure continuity of care for all program participants. Report contents include a description of the purpose of the project, goals and objectives, methodology, evaluation, results and outcomes, publications and products, dissemination and utilization of results, future plans and follow-up, and type and amount of support and resources needed to replicate. An annotation and a keywords list are included. The report includes one appendix: grant objectives status as of April 2003. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org

Keywords: Blood and lymphatic diseases, Communities, Families, Final reports, Health care delivery, Health services, Mental health, North Carolina, Rural populations, Sickle cell disease
   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.