Search Results: MCHLine

Annotation: This guide is meant to serve as a resource for school nurses and other school personnel to alert them to the signs and symptoms of complications of the sickle cell diseases and to educate them about what to do if they encounter a child with such signs and symptoms. The guide is divided into the following sections: (1) introduction, (2) what is sickle cell disease?, (3) warning signs, (4) what is sickle cell trait? (5) complications related to sickle cell disease, (6) medical management, (7) psychosocial issues, (8) the teacher, and (9) the social workers. The guide also includes the following appendices: (1) glossary, (2) bibliography, (3) New Jersey sickle cell/hemoglobinopathies treatment centers, and (4) New Jersey genetic centers for testing and family counseling.

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Keywords: Child health, Genetic counseling, Genetic disorders, Genetic services, New Jersey, Patient care management, Psychosocial factors, School health services, Sickle cell disease, Sickle cell trait, Social workers, Teachers

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 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 website provides information on newborn screening primarily for expecting and new parents. Resources are also available for prenatal and pediatric health professionals, including information about dried blood spot storage and usage. The content is based on 2008 legislation (the Newborn Screening Saves Lives Act) to expand support, research, and education opportunities for newborn screening. The website is organized as follows: About Newborn Screening (newborn screening facts, genetic and family history, screening resources, conditions screened by state); What to Expect (before birth, testing procedure, responding to results, testing outcomes, and what happens to the blood sample); Find a Condition; and Living with Conditions (family experiences, talking about a diagnosis, advocacy and support groups, finding a specialist, insurance and planning, looking to the future). [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: [email protected] Web Site: http://www.geneticalliance.org Available from the website.

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Keywords: Blood tests, Educational materials, Family support, Genetic services, Newborn infants, Resources for professionals, Screening, Special health care needs

Annotation: This final report describes work performed from 2004-2008 as part of the Genetic Services Policy Project (GSPP). It discusses the delivery of genetic services in the United States, gives policy briefs and vignettes of several conditions (breast cancer, cystic fibrosis, multiple congenital anomalies, sickle cell disease, and type 2 diabetes), and discusses the role of cost-effectiveness analysis in decision making about genetic services. In addition it provides an analysis of media messages about genetics and discusses personal genomics services and direct access genetic tests, as well as the changing health care world. Recommendations are included. [Funded in part by the Maternal and Child Health Bureau]

Contact: Genetic Services Policy Project , University of Washington, 1107 NE 45th Street, Suite 400 , Seattle, WA 98105 , Telephone: (206) 685-2371 Fax: (206) 543-9345 E-mail: [email protected] Web Site: http://depts.washington.edu/genpol/about/ Available from the website.

• Full Report

Keywords: Case studies, Cost effectiveness, Final reports, Genetic services

Annotation: This monograph summarizes the proceedings from a two-day summit convened by the Genetic Alliance in September 2007 to examine the current genetic testing landscape and propose solutions to advance the field of quality diagnostics. The meeting brought together a wide variety of stakeholders to offer their concerns and opinions in an atmosphere of truth-telling and transparency. Included in the monograph are a list of goals related to the monitoring of human genome testing set forth by the Department of Health and Human Services (HHS) and a survey of the characteristics of a range of genetic tests. The monograph also addresses research and development opportunities and challenges; testing development; clinical delivery and commercialization; laboratory quality; the role of the Food and Drug Administration in oversight; and the role of professional, laboratory, and patient guidelines and best practices. A glossary of recurrent themes related to genetic testing and a summary of recommended next steps are also provided.

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: Conference proceedings, Diagnostic techniques, Genetic screening, Genetic services, Tests

Annotation: This final report describes a project in Michigan from 2002-2006 to improve genetic health outcomes of Michigan residents by implementing portions of the state genetics plan. Objectives described include (1) increasing genetic literacy and improving family and health care provider access to information about resources and services for children with special health care needs; (2) expanding methods of early identification of children with special health care needs; and (3) integrating newborn screening with other maternal child health data and service delivery systems to promote linkage with intervention services including the medical home. Report contents include an overview of the project's original goals and objectives, methodology, accomplishments, evaluation, lessons learned, future plans and next steps, and plans for sustainability. Also included are a list of peer reviewed publications and presentations, products developed during the project, and appendices with samples of publications and presentations. [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: Children with special health care needs, Early intervention, Final reports, Genetic counseling, Genetic screening, MCH services, Michigan, Neonatal screening, Program descriptions, Service integration, State programs, Strategic plans

Annotation: This report describes a project in Brooklyn, NY from 2002-2006 to broaden education, community-based screening and genetic counseling, and to increase the reach of at-risk community members who lack understanding of the impact of sickle cell disease upon their communities. Contents include an overview of the program needs and goals and objectives, progress to date, efforts in the communities, and the consortium and other collaborations. Appendices include questionnaires, sample forms and reports, processes, workshop questions and tests, and events held. [Funded by the Maternal and Child Health Bureau]

Contact: Brooklyn Hospital Center, Genetics Unit, 121 DeKalb Avenue, Brooklyn, NY 11201, Telephone: (718) 403-8032 Web Site: http://www.tbh.org/healthcare-services/reproductive-genetics

Keywords: Blacks, Community based services, Genetic screening, Hemoglobinopathies, Neonatal screening, New York, , Outreach, Sickle cell disease, Sickle cell trait

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 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]

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

Annotation: This report aims to help focus and faciliate the discussion about reproductive genetic testing by outlining key scientific and medical facts, considering ethical and social implications, and assessing both current and potential oversight for the development and use of reproductive genetic tests. The report presents a range of policy options supported by expert analyss that consider the potential effects, positive and negative, of distinctly different policy directions. The report provides an overview of reproductive genetic testing and discusses (1) genetic testing and issues for society, (2) carrier testing, (3) prenatal testing, (4) preimplantation genetic diagnosis, (5) the future of reproductive genetic testing, (6) the current legal and regulatory landscape, (7) policy options, and (8) what more we need to know. Some information is presented in figures and tables throughout the report. A list of abbreviations is included.

Contact: Genetics and Public Policy Center, , 1717 Massachusetts Avenue, N.W., Suite 530, Washington, DC 20036, Telephone: (202) 663-5971 Fax: (202) 663-5992 Web Site: http://www.DNApolicy.org Available from the website.

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Keywords: Diagnosis, Genetic screening, Genetic services, Prenatal diagnosis, Prenatal screening, Public policy, Reproductive health

Annotation: This report describes a project for newborn screening and surveillance and an integrated public health information repository in Iowa. It identifies priority issues including accountability for newborn metabolic screening in the state, obtainable and relevant birth defects data for planning health and human service programs for children with special health needs, and enhanced methods to inform families of the services for which their child may be eligible. Report contents include a description of the project's purpose, goals and objectives, methodology, evaluation, results and outcomes, dissemination and utilization of the results, future plans and follow up, and the type and amount of support and resources needed to replicate the project. A list of products and publications and the audience they are intended for is provided. [Funded by the Maternal and Child Health Bureau]

Contact: Iowa Department of Public Health, 321 East 12th Street, Des Moines, IA 50319-0075, Telephone: (515) 281-7689 Secondary Telephone: (866) 227-9878 E-mail: https://www.idph.iowa.gov/Contact-Us Web Site: https://hhs.iowa.gov/

Keywords: Children with special health care needs, Collaboration, Family centered services, Final reports, Genetic screening, Integrated services, Iowa, Newborn infants, Program descriptions, State initiatives, Surveillance

Annotation: This final report describes a project to improve access to and utilization of genetic services by Mexican Americans along the U.S.-Mexico border. The report includes an abstract, a discussion of the purpose of the project, the goals and objectives, the methodology, results/outcomes, a discussion, a summary, a list of publications and products, a discussion of dissemination of the results, and a discussion of future plans and follow-up. Statistical information is presented in tables and figures throughout the report. (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: Access to health care, Arizona, California, Cultural factors, Final reports, Genetic services, Health care utilization, Immigrants, Language barriers, Low income groups, MCH research, Mexican Americans, Mexicans, Mexico, New Mexico, Texas

Annotation: This report was prepared for the Genetic Services Branch of the Maternal and Child Health Bureau summarizing the third in a series of technical assistance meetings of grantees from 16 states. The purpose of the meeting was to share information between grantees and learn the lessons needed to forge ahead and build systems that ensure an optimal healthy start for children by providing for the assessment and provision of services. Report sections include summaries of grantee presentations and panel discussions, a review of the status of newborn screening across the nation, a review of two publications produced on best practices in information integration models, pitfalls in translating data into action, principles and core functions of integrated child health information systems, developing indicators to measure child health information systems integration, community-based systems of care, and a wrap-up summary. Also included are a participant list and an assessment tool for comparing state genetics services. [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: [email protected] Web Site: http://genes-r-us.uthscsa.edu Available from the website.

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Keywords: Child health, Conferences, Genetic screening, Health care systems, Information services, Integrated information systems, MCH research, Neonatal screening, Service delivery systems

Annotation: This report focuses on work done by a needs assessment workgroup formulated by the North Carolina Division of Public Health, North Carolina Task Force on Genomics and Public Health. The workgroup's task was to perform a review of current genetic screening and service programs in the state. The report is divided into sections according to the areas examined by the workgroup: public health assessment, evaluation of genetic testing and services, and communication and information dissemination services. Each section describes the current system and programs, identifies challenges, and makes recommendations. In addition, the report provides initial questions for future directions. The report includes seven appendices: a workgroup framework, data sources and methods, a newborn screening follow-up program flowchart, useful Web sites, a Medical Genetics Association survey and results, genomic competencies, and core competencies in genetics. [Funded by the Maternal and Child Health Bureau]

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Keywords: Communication, Evaluation, Genetic screening, Genetic services, Genetics, Information dissemination, Needs assessment, North Carolina, Public health, State programs, Statewide planning

Annotation: This final report describes a project to demonstrate improvements in the integration of health services, in a three county area of Alabama, for infants and young children with spina bifida, facial clefts, and multiple congenital anomalies identified through a birth defect surveillance system. Topics include mainstreaming genetics knowledge, identifying and eliminating barriers to access to health care. linking children to medical homes, use of technology for tracking and follow up through a database system containing all pertinent information needed to measure the morbidity and mortality of infants enrolled in the project, and statewide cultural competency training for health care providers. Report sections include the purpose of the project and relationship to other title V maternal and child health programs, goals and objectives, methodology, evaluation, results and outcomes, dissemination and utilization of results, future plans and follow up, and type and amount of support and resources needed to replicate the program. An annotation and keywords are also provided along with a resource notebook of publications and products produced during the project. [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: Access to health care, Alabama, Community health services, Community programs, Congenital abnormalities, Databases, Final reports, Genetic screening, Infants, Medical home, Service integration, Young children

Annotation: This report describes a project conducted from 2001 to 2003 in Nebraska to implement a comprehensive needs assessment of genetic screening services. The needs assessment resulted in a state genetic plan for newborn screening and infrastructure development. 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, futures plan and follow-up, and type and amount of support and resources needed to replicate. Also included are an annotation and keyword list and an abstract. The report also includes the publication, Nebraska's Plan for Newborn Screening and Genetic Services. [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: Final reports, Genetic screening, Genetic services, MCH services, Nebraska, Needs assessment, Neonatal screening, State programs

Annotation: This guide is intended for use as an aid to help genetic service providers better understand their client populations and reduce barriers to the provision of genetic services. The guide is geared for health professionals both with and without experience caring for Mexican Americans. The guide is divided into eight main sections: (1) who are Mexican Americans, (2) cultural values and beliefs and their relationship to health behaviors, (3) what is curanderismo, (4) Mexican American folk beliefs regarding genetic and other conditions, (5) client perceptions of genetic services and barriers to care, (6) cultural competence and genetic practice, (7) tool kit, and (8) supplement. The guide also includes a bibliography. [Funded by the Maternal and Child Health Bureau]

Contact: University of Texas Health Science Center at San Antonio, 7703 Floyd Curl Drive, San Antonio, TX 78229, Telephone: (210) 567-7000 Web Site: http://www.uthscsa.edu Available from the website.

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Keywords: Cultural barriers, Cultural beliefs, Cultural factors, Cultural sensitivity, Culturally competent services, Genetic services, Health behavior, Health personnel, Hispanics, MCH research, Mexican Americans, Resource materials

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.

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

Annotation: This report addresses strategic planning goals and objectives relating to issues in reproductive health. These goals are as follows: (1) pursue research leading to improved outcomes of assisted reproductive technologies (ART); (2) use genetic advances to identify factors leading to infertility; (3) use genetic advances to identify novel contraceptive leads; (4) increase efforts to develop acceptable male contraceptives; (5) identify new treatments for common reproductive problems; (6) conduct research on male reproductive behaviors; (7) identify new strategies for improving contraceptive use; (8) study the behavioral factors relating to infertility, the use of infertility services, the ethics of infertility treatment, and the status of children born as a result of ART; and (9) increase knowledge about healthy sexuality. Objectives include reducing the incidence of unwanted pregnancy; progressing toward desired levels of fertility; and reducing morbidity from diseases and disorders of the reproductive system. Additional information is provided on training and education, and a roster of the strategic plan working group members is included.

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

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Keywords: Genetic services, Health services, Infertility, Reproductive health, Reproductive technologies, Sexuality, Strategic plans, Unplanned pregnancy, Unwanted pregnancy