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Strengthen the Evidence for Maternal and Child Health Programs

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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 20 (37 total).

American College of Medical Genetics. n.d.. Hearing loss, genetics, and your child. Bethesda, MD: American College of Medical Genetics, 2 pp.

Annotation: This brochure provides information for parents of children with hearing loss. The brochure discusses genetics and hearing loss; insurance and paying for genetic testing; what parents should do once hearing loss has been diagnosed; why it is important for children with hearing loss to be seen by a geneticist; how to prepare for the genetics appointment; and what happens at the appointment.

Contact: American College of Medical Genetics, 7220 Wisconsin Avenue, N.W., Suite 300, Bethesda, MD 20814, Telephone: (301) 718-9603 Fax: (301) 718-9604 E-mail: acmg@acmg.net Web Site: http://www.acmg.net Available from the website.

Keywords: Children, Consumer education materials, Genes, Genetic disorders, Genetic screening, Genetic services, Genetics, Hearing disorders, Hearing screening, Hearing tests, Infants

Solomon J. 2011. National evaluation phase II report: Implementation and evaluation, January 2007 - June 2010. Community Genetics Education Network (CGEN), 76 pp.

Annotation: This evaluation report summarizes methods, outputs, and outcomes of Phase II (community awareness and education) of the Community Genetics Education Project, a project funded by a Health Resources and Services Administration cooperative agreement with the March of Dimes with the goal of increasing the genetic literacy of African Americans, Latinos, Asian Americans, and Pacific Islanders. The report aims to identify overarching challenges, lessons learned, and best practice implications. Specifically, the report (1) summarizes methodologies used in the development of this report, (2) provides an overview of local site interventions, (3) describes the roles of various project partners in Phase II, (4) summarizes common elements of the local evaluations and provides an overview of specific local evaluation designs and methods, (5) summarizes and discusses local evaluation findings, (6) addresses how these findings have been disseminated and discussed, (7) discusses additional Phase II outcomes, (8) details implementation challenges and lessons learned, and (9) summarizes best practice implications.Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Blacks, Communities, Evaluation, Genetics education, Health literacy, Hispanic Americans, Asian Americans, Intervention, Outcome and process assessment, Pacific Islanders

Lewis JA, Freda MC, Williams JK. 2010. Genetic issues for perinatal nurses. (2nd ed.). White Plains, NY: March of Dimes, 70 pp. (March of Dimes nursing module)

Annotation: This learning module is designed to increase nurses' knowledge of genetics and to provide a sound baseline on which to build nursing care for pregnant women, their infants, and their families. The module includes an update of genetic discoveries for inherited diseases and birth defects, as well as discussion of genetics-related ethical issues and nursing responsibilities for reproducing families. Introductory materials describe the module format, student evaluation, independent study, facilitated study, cognitive objectives, and expected practice outcomes. Key concepts, a glossary, and pre- and postinstructional measurement sections are also included. Section topics include basic genetic information, principles of inheritance: Mendel's laws, principles of nontraditional inheritance patterns, multifactorial inheritance, the importance of genetic family history, genetic screening, prevention of birth defects, and genetic testing. Additional sections review genetic counseling, nursing and the future of genetics. Additional sections include clinical applications, group discussion items, an independent study test, an independent study application, references, and other supplementary materials. The module has been approved for continuing education credits for registered nurses in New York and California.

Contact: March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, Telephone: (914) 997-4488 Secondary Telephone: Web Site: http://www.marchofdimes.com $20.00, plus shipping and handling of $3.40. Document Number: ISBN 9780865251267.

Keywords: Congenital abnormalities, Educational materials, Genetics education, Nurse midwives, Nursing education, Professional education

Genetic Alliance and District of Columbia Department of Public Health. 2010. Understanding genetics: A District of Columbia guide for patients and health professionals. Washington, DC: Genetic Alliance, 100 pp.

Annotation: This guide for patients and health professionals covers basic genetics concepts in addition to providing detailed information about genetic diagnosis, newborn screening, family health history, genetic counseling, and genetic testing and its application. It includes a discussion of the psychological and social implications as well as ethical and legal issues. Consumer fact sheets are also provided. The appendices include competencies in genetics for health professions. The guide is customized for the Washington, D.C. region and was produced as a partnership between the Genetic Alliance and the District of Columbia Department of Health.

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: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Consumer education materials, District of Columbia, Genetic counseling, Genetic screening, Genetics, Genetics education, Resources for professionals

National Institute on Alcohol Abuse and Alcoholism, Underage Drinking Research Initiative. 2010. Parenting to prevent childhood alcohol use. Bethesda, MD: National Institute on Alcohol Abuse and Alcoholism, 4 pp.

Annotation: This brochure provide information on what parents can do to help their children avoid abusing alcohol. Topics include adolescent alcohol use, how parenting style affects adolescents' alcohol-use decisions, modeling, genetics, and whether adolescents listen.

Contact: National Institute on Alcohol Abuse and Alcoholism, , 5635 Fishers Lane, MSC 9304, Bethesda, MD 20892-9304, Telephone: (301) 443-3860 Fax: (301) 780-1726 E-mail: NIAAAweb-r@exchange.nih.gov Web Site: http://www.niaaa.nih.gov Available from the website.

Keywords: Adolescent attitudes, Adolescent behavior, Adolescent development, Alcohol consumption, Communication, Consumer education materials, Genetics, High risk adolescents, Parent child relations, Parenting skills, Prevention

Genetic Alliance and New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services. 2008. Understanding genetics: A New York, Mid-Atlantic guide for patients and health professionals. Washington, DC: Genetic Alliance, 99 pp.

Annotation: This guide for patients and health professionals covers basic genetics concepts in addition to providing detailed information about genetic diagnosis, newborn screening, family health history, genetic counseling, and genetic testing and its application. It includes a discussion of the psychological and social implications as well as ethical and legal issues. Patient stories and consumer profiles are also provided. The appendices include competencies in genetics for health professions. The guide is customized for the New York, Mid-Atlantic region and is produced as a partnership between Genetic Alliance and the New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services.

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: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Consumer education materials, Genetic counseling, Genetic screening, Genetics, Genetics education, Geographic regions, New York, Resources for professionals

New England Public Health Genetics Education Collaborative and Genetic Alliance. [2007]. Understanding genetics: A New England guide for patients and health professionals. Washington, DC; Genetic Alliance, 82 pp.

Annotation: The purpose of this manual is to provide a genetics educational resource for health professionals and consumers in the New England states and to increase awareness of specialty care in genetics. The manual opens with an introduction to genetics concepts, followed by a description of the different types and applications of genetics tests. Information on diagnosing a genetic disease; family-history taking; newborn screening; genetic counseling; indications for a genetic referral; psychological and social implications; and ethical, legal and social issues is also provided. Resources available in New England are listed, and a series of fact sheets for consumers that can be photocopied is included.

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: info@geneticalliance.org Web Site: http://www.geneticalliance.org Available from the website.

Keywords: Diagnosis, Genetic counseling, Genetic disorders, Genetic screening, Genetics education

[Doksum T, Foster S]. 2006. The Genetics Education Needs Evaluation Project: Final report. [Cambridge, MA]: Abt Associates, 85 pp., plus appendices.

Annotation: This report describes a project whose central mission was to develop community-based participatory strategies to improve access to culturally and linguistically appropriate genetics information, resources, and services to assist underserved populations in making informed choices about their health. Collaborative partners included Abt Associates, the National March of Dimes Foundation, the Genetic Alliance, Family Voices, the Michigan GENE Project, and the Washington Heights/Inwood GENE Project (New York), and the Midwest Latino Research Center. Report contents include the executive summary; introduction; history of the project and the approach; a summary of information-gathering activities; an outline of community projects; a review of the development of national partnerships; reflections on the project infrastructure and partnerships; and lessons learned, next steps, and recommendations. Appendices include the project logic model and evaluation plan, local evaluation reports, literature and materials review, a summary of the literature on genetics education and underserved populations, a study of consumer organizations, a meeting summary, a research paper, notes from focus groups, community needs and assets assessments, and the partnership agreement. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org

Keywords: Collaboration, Community surveys, Culturally competent services, Final reports, Genetic counseling, Genetics, Genetics education, MCH research, Michigan, New York, Patient education, Program descriptions, Underserved communities

Coursey YL. 2006. Sickle Cell Foundation of Palm Beach County: Final report. West Palm Beach, FL: Sickle Cell Foundation of Palm Beach County, 8 pp., plus appendices.

Annotation: This report describes a project to strengthen and improve the follow-up, education, counseling, and coordination of care for families of infants who test positive for sickle cell disease or sickle cell trait. Report contents include descriptions of the population serviced in the five county region of Southeast Florida and barriers to service delivery, goals and objectives of the project, an outline of process measures, and a list of highlights of the project years 2003-2005. Appendices include books, booklets, and other handout informational materials for parents of children who tested positive for sickle cell disease/trait. Also included are a DVD and a VHS tape with a new born screening documentary video in English and Creole.

Contact: Sickle Cell Foundation of Palm Beach County, 1600 North Australian Avenue, West Palm Beach, FL 33407-5621, Telephone: (561) 833-3113 Fax: (561) 659-4505 Web Site: http://www.sicklecellpalmbeach.org

Keywords: Genetics education, Final reports, Florida, Genetic counseling, Genetic screening, Hemoglobinopathies, Local programs, Non English language materials, Sickle cell disease

North Carolina Task Force on Genomics and Public Health. 2004. North Carolina public health: Genomics plan. [Raleigh, NC]: North Carolina Department of Health and Human Services, Office of Genomics, 27 pp.

Annotation: This report provides guidance to North Carolina as the scientific discoveries of the genomic revolution move from the laboratory into clinical and public health medicine. The report contains a set of recommendations in several broad areas of concern (communication and education, epidemiology and surveillance, genetic testing and services, and future directions) and with each recommendation suggests initial action steps to help the state move toward the objective. The report, which includes an executive summary, explains what genomics is, describes the development of the state plan, and lists the primary goals of the plan. A conclusion is also included. The report contains four appendices: a genomics needs executive summary, a glossary, notes and references, and acknowledgments. [Funded by the Maternal and Child Health Bureau]

Keywords: Communication, Education, Epidemiology, Genetic screening, Genetic services, Genetics, North Carolina, Population surveillance, Public health, Statewide planning

American Society of Human Genetics. 2004. Enhancement of K-12 human genetics education: Creating a cooperative plan. [Bethesda, MD]: American Society of Human Genetics, 16 pp.

Annotation: This report provides information about a meeting convened in Bethesda, Maryland, on September 9-10, 2004, in recognition of the need to develop a cooperative plan to enhance human genetics education in classrooms, disseminate information, and generate interest among students in careers in human genetics and related fields. The report discusses differing perspectives on human genetics and genetics community resources. A brief summary of the meeting discussion is included, along with a table outlining what geneticists can do for students in different grades.

Contact: American Society of Human Genetics, 9650 Rockville Pike, Bethesda, MD 20814, Telephone: (301) 634-7300 Secondary Telephone: (866) HUM-GENE Fax: (301) 634-7079 Web Site: http://www.ashg.org/ Available from the website.

Keywords: Careers, Elementary school, Geneticists, Genetics education, High school students, Middle school, School-age children

Kahn NB. 2003. Genetics in Primary Care (GPC): A faculty development initiative—[Final report]. Leawood, KS: Society of Teachers of Family Medicine, 58 pp., exec. sum. (21 pp.).

Annotation: This report chronicles the activities of the Genetics in Primary Care (GPC) project over three phases which spanned five years. Topics include how to better teach students, residents, and faculty about genetics in primary care; the training of faculty teams from around the country; the development of curricula and teaching products; and recommendations for future directions. Issues which arose through the implementation are discussed, and outcomes are detailed. Conclusions and recommendations emerging from the project experience are provided for the government's consideration as strategies for primary care education with regard to genetics. The report also includes an executive summary and two attachments which list the advisory committee organizations and project members. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Final reports, Genetics education, MCH research, Primary care, Professional education, Professional training, Program descriptions

National Institute of Child Health and Human Development. 2001, reprinted 2003. Genetics and fetal antecedents of disease susceptibility. Rockville, MD: National Institute of Child Health and Human Development, 17 pp. (From cells to selves)

Annotation: This publication discusses the interaction of the genotype with socioeconomic, environmental, and psychological factors in the fetal and postnatal environment that contribute to an individual's health or susceptibility to disease. Report contents include the strategic planning process, goals and objectives, scope of the plan, scientific context and opportunities, research priorities, infrastructure priorities, and priority methodology and policy issues. The appendix includes the roster of advisors.

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, Information Resource Center, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: Fax: (866) 760-5947 E-mail: NICHDInformationResourceCenter@mail.nih.gov Web Site: http://www.nichd.nih.gov Available from the website.

Keywords: Congenital abnormalities, Environmental health, Genetics, Hereditary diseases, Morbidity, Mortality, Patient education materials, Psychological needs, Socioeconomic factors

Burke W, Fryer-Edwards K, Pinsky LE, eds. 2001. Genetics in primary care (GPC): Training program curriculum materials. (Rev. ed.). Austin, TX: National Newborn Screening and Genetics Resource Center, 146 pp. (Genetics in primary care (GPC): A faculty development initiative)

Annotation: This curriculum is designed to serve as a bridge between primary care and genetics. The curriculum includes modules focusing on the following eight areas: (1) breast/ovarian cancer, (2) cardiovascular disease, (3) colorectal cancer, (4) congenital hearing loss, (5) dementia, (6) developmental delay, (7) iron overload, and (8) ethical, legal, and social issues. Each module includes teaching cases with questions and discussion to illustrate genetic themes and diagnoses. Each module also includes references to key documents and useful Web sites for additional background information. An overview of the Genetics in Primary Care (GPC) program and a list of its members from 1998-2001 are provided. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: therrell@uthscsa.edu Web Site: http://genes-r-us.uthscsa.edu Available from the website.

Keywords: Breast cancer, Cardiovascular disease, Colon cancer, Curricula, Developmental disabilities, Ethics, Genetics, Hearing disorders, Iron overload diseases, Legal issues, Mental disorders, Ovarian cancer, Primary care, Professional education materials

Roeber C, Oles B, Massad J. 2001. Genetics literacy project: Literature and materials review. Takoma Park, MD: LTG Associates, 2 v.

Annotation: This two-volume document includes a report and a research bibliography prepared as an initial step toward the development of culturally appropriate outreach to promote genetics literacy. The first volume includes a report centering on three questions: (1) What kinds of information on genetics and health currently exist? (2) When do people encounter information about genetics and health care? (3) How do people find information on health care, and on genetic health care in particular? The report concludes with two appendices providing a glossary and annotated resources from the Internet and World Wide Web. The second volume contains all references that were collected during the literature and materials review of volume one, including books, peer reviewed journal articles, government reports, conference proceedings, online magazine articles, education program materials, and popular news media. [Funded in part by the Maternal and Child Health Bureau]

Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: therrell@uthscsa.edu Web Site: http://genes-r-us.uthscsa.edu Available from the website.

Keywords: Bibliographies, Cultural sensitivity, Culturally competent services, Genetics, Genetics education, Literature reviews, Outreach, Professional education materials, Research, World Wide Web

Massad J, Oles B, Roeber C, Tashima N, Crain C. 2001. Genetics literacy project: Consumer organization study report. Takoma Park, MD: LTG Associates, 1 v.

Annotation: This report presents research examining the efforts of organizations serving the needs of families and individuals affected by genetic conditions. This research is one phase in the development of a toolkit to guide efforts to conduct education and outreach on genetics and health care to promote informed health care decisions, particularly for the underserved. This current phase of research is focused specifically on efforts of organizations to meet the needs of individuals and families affected by known genetic conditions.The report is organized into three main sections. Section 1 discusses issues related to the content of outreach materials produced, the development of these materials, modes of dissemation to consumers, and the gneral health outreach context in which they operate. Section 2 discusses lessons learned by consumer organizations that have direct bearing on outreach efforts. Section 3 discusses specific next steps to be carried out as the research project moves forward. [Funded by the Maternal and Child Health Bureau]

Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: therrell@uthscsa.edu Web Site: http://genes-r-us.uthscsa.edu Available from the website.

Keywords: Development, Education, Educational materials, Families, Genetic disorders, Genetics, Health care, Outreach, Research, Underserved communities, Writing

Expert Panel on Genetics and Nursing: Implications for Education and Practice. 2000. Report of the Expert Panel on Genetics and Nursing: Implications for Education and Practice. Rockville, MD: U.S. Health Resources and Services Administration, 106 pp.

Annotation: This report summarizes the topics, principles, and recommendations of the expert panel meeting held September 28-29, 2000 in Washington, DC. Topics include leadership education, workforce, practice, global health, interdisciplinary collaboration, cultural competence, and areas of genetic knowledge and skill competencies. Five principles describe gaps in the genetic education of students in many (if not all) schools of nursing. Eight recommendations address several areas including genetics education programming, dissemination of genetics information and technological advances, interdisciplinary programs, collaborations and partnerships, and workforce issues. This report also includes three invited papers, 21 expert panel members' reports, and selected members' biographies. [Funded in part by the Maternal and Child Health Bureau]

Keywords: Competency based education, Conferences, Genetics education, Nursing education, Personnel needs, Professional education

Wilker ME. 2000. Partnership for Genetic Services Pilot Program - Mid Atlantic Project [Year II progress report]. Washington, DC: Alliance of Genetic Support Groups, ca. 50 pp.

Annotation: This report describes the second year of the project to assist providers-in-training and managed care providers-in-practice to (1) increase awareness of the needs and resources of genetic consumers, (2) improve provider access to quality, consumer-oriented support group practices to support, supplement, and enhance services, and (3) develop replicable education models for dissemination and expansion of program activities. Contents include the program abstract outlining the problem to be addressed, goals and objectives, methodology, evaluation, and experience to date; a copy of the application for assistance; the report including application budget information assurance and checklist, attachments, and the narrative report. Appendices include a brochure, interview questions, a sample checklist, a focus group topic guide, a sample provider survey, a proposal, and an evaluation plan used in the program. [Funded 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: info@geneticalliance.org Web Site: http://www.geneticalliance.org

Keywords: Genetic services, Genetics education, Health care delivery, Managed care, Professional education, Program descriptions, Progress reports

Smith A. [1998]. Genetic Applications for Health Professionals [Final report]. Denver, CO: University of Colorado, 14 pp.

Annotation: This project was designed to improve family and child health by expanding the knowledge of genetics among health and human service professionals working in maternal and child health settings. A continuing education course in applied genetics was developed for nurses and other health professionals who deliver maternal and child health service. The short course was packaged for distribution and dissemination throughout Region VIII using a "training for the trainers" model. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, U.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: customerservice@ntis.gov Web Site: http://www.ntis.gov Document Number: NTIS PB91-225128.

Keywords: Continuing Education, Education of Health Professionals, Genetics Education, Nurses

Council of Regional Networks for Genetic Services. 1997. Guidelines for clinical genetic services for the public's health. Atlanta, GA: Council of Regional Networks for Genetic Services, 55 pp.

Annotation: This document provides detailed guidelines for state and local public health agencies to set up genetics services in order to prevent the occurrence of many birth defects, treat those that occur before damage results, and decrease the burden of chronic disabling diseases. The guidelines are written in seven parts: 1) organizational structure, 2) discussion of preventive potential, 3) types and scope of services, 4) research, 5) education, 6) documentation of needs and services, and 7) funding sources. Other issues discussed include qualifications of genetics staff, and privacy and confidentiality. [Funded by the Maternal and Child Health Bureau]

Keywords: Genetic counseling, Genetic screening, Genetic services, Genetics education, Neonatal screening, Prenatal screening, Public health services, State MCH programs

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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.