Search Results: MCHLine

Annotation: This report of the New England Regional Genetics Group includes a review of their administration/organization and the projects they have administered. Reports are submitted for the following completed projects: External Quality Control of Pregnancy AFP; New England Regional Myelodysplasia Nurse Clinicians; Development of a Cytogenetic Quality Assurance Program; Prevalence of Common Birth Defects in New England; Evaluation of Satellite/Regional Clinics; Fragile-X Syndrome Project; New England Regional Speakers' Bureau; Genetics Digest; and Teratogen Exposure Registry and Surveillance. [Funded by the Maternal and Child Health Bureau]

Contact: NERGG, Inc., P.O. Box 920288, Needham, MA 02492, Telephone: (781) 444-0126 Fax: (781) 444-0127 E-mail: [email protected] Web Site: http://www.nergg.org Available from the website.

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Keywords: New England, Regional genetics networks

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: [email protected] Web Site: http://www.acmg.net Available from the website.

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

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.

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

Annotation: This series comprises 10 webinars and companion fact sheets designed to increase awareness and improve understanding among health professionals related to the provision of genetic medicine in primary care settings. The series introduces the topic, explains the relevance of genetic medicine to primary care, and provides case examples of how it can be integrated into everyday practice. Topics include building an accurate family history, ordering tests, evaluation and referral, dispelling myths, counseling, technical assistance, resources, genetics across the lifespan, and epigenetics. [Funded by the Maternal and Child Health Bureau]

Contact: Genetics in Primary Care Institute , National Center for Medical Home Implementation, c/o American Academy of Pediatrics , 345 Park Boulevard, Itasca, IL 60143, Telephone: (847) 434-7605 Secondary Telephone: (800) 433-9016, ext. 7605 Web Site: http://geneticsinprimarycare.org/Pages/default.aspx Available from the website.

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Keywords: Case studies, Medical genetics, Medical history, Primary care, Service integration

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.

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

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, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

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

Annotation: This paper provides information from a workshop held in Bethesda, Maryland, on February 17-19, 2011, that addressed issues in the domain of behavior that are potential priorities for research over the next decade because they could substantively impact research and practice. Major issues discussed include (1) normative developmental trajectories, (2) impact of environmental factors on behavioral development, (3) understanding behavior in social, economic, and cultural contexts, (4) comprehensive integrated modeling of neurobiological, genetic, and environmental mechanisms underlying behavioral development, (5) phenotypic descriptions of behaviors that cut across typical and atypical development,(6) understanding dimensionality in typical and atypical development, (7) self-regulation of behavior and executive functions, and (8) promoting healthy development.

Contact: Eunice Kennedy Shriver National Institute of Child Health and Human Development, P.O. Box 3006, Rockville, MD 20847, Telephone: (800) 370-2943 Secondary Telephone: (888) 320-6942 Fax: (866) 760-5947 Web Site: https://www.nichd.nih.gov/Pages/index.aspx Available from the website.

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Keywords: Behavior, Cultural factors, Development, Economic factors, Environmental influences, Genetics, Health promotion, Research

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

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: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

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

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.

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

Annotation: This paper discusses new research showing that environmental influences can affect whether and how genes are expressed (i.e., whether genes are activated). The paper presents the issue; explains what science tells us about how the healthy development of all organs is affected by the way that genes are expressed; and discusses popular misrepresentations of science, the science-policy gap, and implications for policy and programs.

Contact: National Scientific Council on the Developing Child, Harvard University, 50 Church Street, Fourth Floor, Cambridge, MA 02138, Telephone: (617) 496-0578 E-mail: [email protected] Web Site: http://www.developingchild.net Available from the website.

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Keywords: Development, Environmental exposure, Environmental influences, Genes, Genetics, Health, Programs, Public policy

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: [email protected] Web Site: http://www.niaaa.nih.gov Available from the website.

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

Annotation: This book evaluates the research plan for the National Children's Study (NCS), which is planned to be the largest long-term study of environmental and genetic effects on children's health ever conducted in the United States. The book assesses the scientific rigor of the study and the extent to which it is being carried out with methods, measures, and collection of data and specimens to maximize the scientific yield of the study. The book provides background and discusses the NCS goals, conceptual framework, and core hypotheses; priority outcome and exposure measures; and study design, data collection, and analysis.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu Available from the website after registration. Document Number: ISBN (13) 978-0-309-12056-2 ISBN (10) 0-309-12056-X.

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Keywords: Child health, Environmental influences, Evaluation, Genetics, National surveys, Research

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: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

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

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: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

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

Annotation: This report describes four priority areas for the Washington State Genetics Plan developed between June 2002 and May 2007. The four areas are: (1) coordination and coverage of services, (2) access to quality services, (3) confidentiality and genetic discrimination, and (4) raising awareness of genetic and disability issues. Report contents include goals, objectives, and methodology as well as descriptions of barriers encountered, accomplishments, revisions to original goals and evaluations. Additional information is provided on future plans and sustainability, and a list of selected products produced. [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: Access to health care, Confidentiality, Disabilities, Discrimination, Final reports, Genetic screening, Genetics, Screening, State initiatives, Washington

Annotation: This report summarizes 4 discussions held by a 21 member panel during 2007 concerning the feasibility of a biobank in Connecticut and the value it might add to the study of preterm births and birth defects. Biobank models; funding sources; possible increases in research potential; affordability, ethical, legal, and social issues; and the likely public and private perceptions of such a bank all receive examination. Findings and recommendations conclude the report.

Contact: Connecticut Department of Public Health, 410 Capitol Avenue, Hartford, CT 06134-0308, Telephone: (860) 509-8000 E-mail: [email protected] Web Site: http://www.ct.gov/dph Available from the website.

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Keywords: Bioethics, Budgets, Congenital abnormalities, Connecticut, Genetic markers, Genetics, Low birthweight, Prenatal screening, Preterm birth, State programs

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, E-mail: [email protected] 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

Annotation: This paper empirically investigates the hypothesis that early childhood television viewing serves as a trigger for autism among a set of children vulnerable to developing the condition because of their underlying genetics. The paper introduces the issue; provides a brief primer on autism; and discusses four reasons to suspect television as a trigger for autism, early childhood television watching and precipitation, autism and precipitation, and autism and cable television; and provides an interpretation, implications, and a conclusion. References are included. Statistical information is presented in tables and figures grouped together at the end of the report.

Contact: National Bureau of Economic Research, 1050 Massachusetts Avenue, Cambridge, MA 02138-5398, Telephone: (617) 868-3900 Fax: (617) 868-2742 E-mail: [email protected] Web Site: http://www.nber.org Available from the website.

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Keywords: Children with special health care needs, Autism, Genetics, Research, Television

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