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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 8 (8 total).

Genetic Alliance. 2013-. Genes in life. Washington, DC: Genetic Alliance,

Annotation: This resource provides information about genetics and health. Topics include how genes work; genes, lifestyle, and environment; collecting family health history; genetic disease information; advocacy and support groups; financial planning; talking to families and health professionals; compensation for genetic testing; whole genome sequencing; screening vs. testing; disease research; patient privacy; clinical trials; and biobanks. Features include Ask the Experts, frequently asked questions, and a blog. [Funded in part by the Maternal and Child Health Bureau]

Contact: Genetic Alliance, 4301 Connecticut Avenue, N.W., Suite 404, Washington, DC 20008-2369, Telephone: (202) 966-5557 Secondary Telephone: (800) 336-GENE Fax: (202) 966-8553 E-mail: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Communication, Counseling, Family health, Genetics, Information sources, Medical history, Research, Screening, Testing

Pickett OK, DeFrancis Sun B. 2012. Genetics: Professional resource brief (upd. ed.). Washington, DC: National Center for Education in Maternal and Child Health, multiple items.

Annotation: This brief is an electronic guide to recent resources on genetics and genomics; genetic testing, counseling, and disorders; and newborn screening. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Telephone: (202) 784-9770 E-mail: [email protected] Web Site: https://www.ncemch.org Available from the website.

Keywords: Genetic counseling, Genetic disorders, Genetic screening, Genetic services, Genetics, Genomics, Newborn screening, Resources for professionals, Testing

U.S. Government Accountability Office. 2010. Direct-to-consumer genetic tests: Misleading test results are further complicated by deceptive marketing and other questionable practices—Testimony. Washington, DC: U.S. Government Accountability Office, 29 pp.

Annotation: This testimony before the House of Representative's Subcommittee on Oversight and Investigations, Committee on Energy and Commerce, summarizes findings from an investigation conducted by the Government Accountability Office (GAO) on the reliability of test results from direct-to-consumer genetic tests and the marketing and advertising used to sell these products. Included is a full description of the study conducted by GAO in 2006 and the results of their findings.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 Secondary Telephone: E-mail: [email protected] Web Site: http://www.gao.gov Available from the website.

Keywords: Consumer protection, Federal initiatives, Genetic predisposition, Investigations, Marketing, Research, Testing

Association of Public Health Laboratories. 2010. 2010 Newborn Screening and Genetics Testing Symposium. Silver Spring, MD: Association of Public Health Laboratories,

Annotation: This website provides information about the 2010 Newborn Screening and Genetic Testing Symposium held in Orlando, Florida, on May 3-6, 2010. The symposium brought together almost 400 laboratories, follow-up professionals, and metabolic specialists from around the world. The site presents the symposium schedule and provides links for presentations that have been authorized for posting. Meeting session topics included health information technology, education, program quality improvement, laboratory quality improvement, international perspectives, old conditions, new information, and candidate conditions.

Contact: Association of Public Health Laboratories, 8515 Georgia Avenue, Suite 700 , Silver Spring, MD 20910, Telephone: (240) 485-2745 Secondary Telephone: (240) 485-2747 Fax: (240) 485-2700 E-mail: [email protected] Web Site: http://www.aphl.org Available from the website.

Keywords: Conference proceedings, Education, Genetic testing, Health, Information, Laboratory techniques, Neonatal screening, Programs, Technology

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. 2010. Screening U.S. college athletes for their sickle cell disease carrier status. Rockville, MD: U.S. Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, 18 pp.

Annotation: This briefing paper outlines issues surrounding the screening of young athletes for their sickle disease carrier status (sickle cell trait), a genetic condition. The report discusses research findings and reports on health outcomes of individuals with sickle sell trait, public health implications of the National Collegiate Athletic Association rule on testing athletes for sickle cell trait, and recommendations. [Funded by the Maternal and Child Health Bureau]

Contact: U.S. Advisory Committee on Heritable Disorders in Newborns and Children, U.S. Maternal and Child Health Bureau, Parklawn Building, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-1080 Web Site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/ Available from the website.

Keywords: Athletes, College students, Genetic disorders, Genetic screening, Public policy, Research, Sickle cell trait, Testing

CJ Foundation for SIDS. 2010. Information for families: Medical testing for inherited disorders following a sudden unexplained death [upd ed.]. [Hackensack, NJ]: CJ Foundation for SIDS, 5 pp.

Annotation: This paper provides information to help families talk to their doctor about medical testing for inherited disorders following a sudden unexplained death. Although the paper points out that sudden unexpected infant death syndrome (SIDS) cannot be predicted or prevented, it describes certain rare, inheritable diseases that can cause sudden death in infants and children. The paper discusses the evaluation of inborn errors of metabolism and cardiac mechanisms, including Long QT Syndrome. Research and commercial testing options for families are are also presented.

Contact: CJ Foundation for SIDS, HUMC: WFAN Pediatric Center, Hackensack University Medical Center, 30 Prospect Avenue***MERGED WITH FIRST CANDLE*** 2017, Hackensack, NJ 07601, Telephone: (888) 8CJ-SIDS Secondary Telephone: (551) 996-5111 Fax: (551) 996-5326 E-mail: [email protected] Web Site: http://www.cjsids.org Available from the website.

Keywords: Child death, Consumer education materials, Genetic disorders, Infant death, SIDS, Testing

U.S. Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. 2006. Evidence-based evaluation and decision process for the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children: A workgroup meeting summary. [Rockville, MD]: U.S. Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children, 14 pp. (Committee report)

Annotation: This paper summarizes the outcomes of a workgroup meeting convened by the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) to discuss how to establish a rigorous evaluation and recommendation process to determine the suitability of screening for certain rare inherited disorders. The paper includes background on ACHDGDNC; an overview of the nomination form for adding conditions to the uniform screening panel of 29 conditions; issues in evidence review for genetics and pediatric and newborn screening; and a case study on the evaluation of Pompe disease. [Funded by the Maternal and Child Health Bureau]

Contact: U.S. Advisory Committee on Heritable Disorders in Newborns and Children, U.S. Maternal and Child Health Bureau, Parklawn Building, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-1080 Web Site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/ Available from the website.

Keywords: Children, Evaluation, Genetic disorders, Genetic testing, Infants, Screening

Henderson JV. 2002. Genetics in clinical practice: A team approach. Lebanon, NH: Interactive Media Laboratory, Dartmouth Medical School, 1 CD-ROM.

Annotation: This CD-ROM is intended to be a virtual mini-fellowship for the primary care provider in evaluation and testing of genetic diseases. It contains an overview of genetics testing (including how testing is done and perspectives of laboratory professionals on genetics testing), interactions with simulated patients, counseling demonstrations given by expert genetics counselors, case discussions, mini-lectures by genetics experts, links to relevant Web sites about genetic testing, and video interviews with real people affected by genetic conditions. Users of this CD-ROM are eligible for continuing education credits from the Accreditation Council for Continuing Medical Education. The CD-ROM can be used in Windows and Macintosh computers.

Contact: Dartmouth Medical School, Interactive Media Laboratory, Colburn Hill, Suite 204, One Medical Center Drive, Lebanon, NH 03756, Telephone: (603)653-1500 Fax: (603)653-1515 E-mail: [email protected] Web Site: https://geiselmed.dartmouth.edu/cfm/research/iml/ Available from the website.

Keywords: Audiovisual materials, CD-ROMs, Continuing education, Genetic counseling, Genetic services, Genetic testing, Professional education

   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. 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.