Search Results: MCHLine

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

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: [email protected] Web Site: http://genes-r-us.uthscsa.edu Available from the website.

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

Annotation: This guide, which is intended to help reduce cultural barriers to the provision of genetic services in South Texas, includes information from interviews with Mexican-American Medicaid clients, traditional healers, and genetic services providers, as well as information from the literature. 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) cultural competence and genetic practice, (6) barriers to obtaining genetic services, and (7) other cultural beliefs regarding health and illness. A tool kit at the end of the guide contains supplemental information and resources. 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, Folk medicine, Genetic services, Hispanics, MCH research, Medicaid, Mexican Americans, Resource materials, Texas

Annotation: This report provides an action plan for the Iowa Department of Public Health to facilitate further genetic and public health collaboration and to help ensure comprehensive genetic health care, education, diagnosis, treatment, and support services for all Iowans. The plan summarizes the results of a 2000 analysis of the genetic health care, laboratory, and surveillance programs and outlines the priority issues identified during the evaluation period. Recommended strategies and goals are provided throughout the report. [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/ Available from the website.

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Keywords: Evaluation, Genetic services, Genetics, Iowa, State programs, Strategic plans

Contact: Child Welfare League of America, 1726 M Street, N.W., Suite 500, Washington, DC 20036, Telephone: (202) 688-4200 Fax: (202) 833-1689 Web Site: http://www.cwla.org Available in libraries. Document Number: 0-87868-775-0.

Keywords: Child welfare, Genetic services, Genetics, Medical history

Annotation: This journal supplement presents U.S. newborn screening system guidelines developed by the Council of Regional Networks for Genetic Services (CORN). These guidelines provide a tool for structuring a system for diagnosis and clinical follow-up of infants, with chronic and disabling conditions such as hemoglobinopathies, endocrinopathies, and metabolic disorders, identified by state Newborn Screening System (NBS) programs. The purposes of this document are: (1) to delineate administrative, logistical, and clinical guidelines for a 5-part system; (2) to emphasize the complexity of treating patients with rare disorders; and (3) to anticipate the expansion of NBS systems to include additional disorders that are best managed by presymptomatic screening, diagnosis, and early treatment. [Funded in part by the Maternal and Child Health Bureau]

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Keywords: Genetic services, Guidelines, Neonatal screening

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: [email protected] Web Site: http://www.geneticalliance.org

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

Annotation: This document is the conference proceedings, program, and directory from the U.S. Maternal and Child Health Bureau (MCHB) Invitational Meeting on the topic of genetic medicine and technology held in November, 1999, in Arlington, Virginia. It includes a brief history of the MCHB Genetic Services Branch and a discussion of the National Agenda for Children with Special Health Care Needs (CSHCN) as part of the Healthy People 2010 objectives. It also provides agendas and summaries of the three meeting tracks whose themes were translating recommendations into action, promotion of the early identification of CSHCN needs through infrastructure development, and improvement and integration of health services for infants and children with genetic conditions. Speaker/staff biographies, a guest directory, a list of MCHB SPRANS genetics projects, and fact sheets on family-centered care for CSHCN and cultural competency are also included. [Funded by the Maternal and Child Health Bureau]

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Keywords: Children with special health care needs, Culturally competent services, Early intervention, Family centered care, Genetic disorders, Genetic services, Genetics, Health services delivery, Healthy People 2010, SPRANS, Technology

Annotation: This report discusses the activities of the Partnership for Genetics Services Pilot Program over a 2-month period to understand the involvement of the corporate Medical Affairs Department in the delivery of services to individuals with, or at risk for, genetic conditions and their families. The report includes the following components: (1) an analyis of interview findings regarding staff responsibilities, resources, challenges, and service delivery; (2) an outline of opportunities for possible next steps, (3) a presentation of the initial data collected, (4) a sketch of the prevalence of some common genetic conditions, (4) two case studies, and (5) examples of available resources. [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: Case studies, Families, Genetic counseling, Genetic disorders, Genetic predisposition, Genetic services, Health services delivery

Annotation: This report considers the need for a central advisory body on genetic testing and enunciates overarching principles on problems that are not integral to genetic testing per se but impinge on, or that may arise as a consequence of, genetic testing. The criteria for the development of new genetic tests, the quality of the laboratories that provide genetic testing to health care providers in clinical practice, the expanding role of non-genetic health care providers in genetic testing, concerns about rare genetic diseases, the need for ensuring that providers include rare diseases when they consider the causes of some of their patients' problems, how and where to obtain information about rare diseases, recommendations for ensuring the continuity and quality of clinical laboratory tests for rare diseases, and recommendations the task force wishes to highlight are discussed. A public health role is discussed in chapter 4.

Contact: Johns Hopkins University Press, 2715 North Charles Street, Baltimore, MD 21218-4363, Telephone: (410) 516-6900 Secondary Telephone: (800) 537-5487 Fax: (410) 516-6998 E-mail: [email protected] Web Site: http://www.press.jhu.edu Available in libraries. Document Number: ISBN 0-8018-5972-7.

Keywords: Genetic screening, Laboratories, Public health services, Rare diseases, Reports

Contact: American Nurses Association, 8515 Georgia Avenue, Suite 400 , Silver Spring, MD 20910, Telephone: (301) 628-5000 Secondary Telephone: (800) 274-4ANA Fax: (301) 628-5001 E-mail: [email protected] Web Site: http://www.nursingworld.org Available in libraries. Document Number: 9807ST.

Keywords: Genetic services, Genetics, Nurse clinicians, Standards

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]

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

Annotation: These proceedings present information from a conference held to better understand how managed care is affecting clinical genetic services and the role(s) of clinical geneticists in the United States. The purpose of the conference and these proceedings is to identify and explore issues regarding the integration of clinical genetic services into managed care. The conference was arranged to present a broad overview of issues in genetic services and managed care including affordability, availability, accessibility, quality (standards or guidelines for care), awareness, sources of funding, cost effectiveness and benefit, and patient and provider satisfaction. Innovative approaches in managed care organizations are also presented. The proceedings also discuss the status of clinical genetic services in managed care organizations from the perspective of the regional genetic networks, Alliance of Genetic Support Groups, and sickle cell organizations, all of which are member organizations of the Council of Regional Networks.

Keywords: Conferences, Councils, Genetic services, Managed care

Annotation: This special issue of this journal focuses on issues pertaining to optimizing the delivery of genetic services; it is based on the observations of health consumers and providers in the New England Regional Genetics Group. The introduction of the journal describes the rationale, history, methodology, and goals of the project. The remainder of the issue covers these broad topics: consumer-provider interactions; the social, ethical, and policy contexts in which genetic services are provided; and specific contexts for direct interactions. [Funded by the Maternal and Child Health Bureau]

Contact: NERGG, Inc., P.O. Box 920288, Needham, MA 02492, Telephone: (781) 444-0126 Contact Phone: (301) 570-6586 Fax: (781) 444-0127 E-mail: [email protected] Contact E-mail: [email protected] Web Site: http://www.nergg.org Available in libraries.

Keywords: Ethics, Genetic services, Health services delivery, Public policy, Regional genetics networks, Social factors

Annotation: These proceedings report on a February 16–17, 1996, conference held in Washington, D.C. Topics covered include: defining and developing guidelines for genetic services at the national, regional, and state levels and by professional organizations; financing genetic services; ethical issues; guidelines for genetic laboratory practices (genetic screening); genetics education for the professional, student, and consumer; and current research and future directions for 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. Document Number: HRSA Info. Ctr. MCHI107.

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Keywords: Conference proceedings, Genetic services, Guidelines

Annotation: This CD-ROM contains guidelines for clinical practice for 15 health conditions. They were developed by the Agency for Health Care Policy and Research and are intended to provide access to clinical information and help with patient management. The guidebook explains the development of the guidelines, includes instructions for installing them on a computer system, and provides information on obtaining technical assistance. The conditions included are: acute pain management, urinary incontinence in adults, prevention of pressure ulcers, cataract in adults, depression in primary care, sickle cell disease in infants, early HIV infection, benign prostatic hyperplasia, management of cancer pain, unstable angina, heart failure, otitis media with effusion in children, quality determinants in mammography, acute lower back problems in adults, and treatment of pressure ulcers.

Contact: U.S. Agency for Healthcare Research and Quality, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 427-1364 Contact Phone: (301) 227-8364 Web Site: http://www.ahrq.gov Available from the website. Document Number: AHCPR 95-DP10.

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Keywords: CD-ROMs, Chronic illnesses and disabilities, Clinical medicine, Educational materials, Genetic disorders, Guidelines, Health care delivery, Health services, Resources for professionals

Annotation: This report assesses the potential impact of new advances in human genetics on the current system of health care coverage in the United States and makes recommendations for managing that impact within a reformed health care system. It also takes a look at the factual background of genetic information and health care financing.

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Keywords: Access to health care, Genetic predisposition, Genetic screening, Health care services, Health care utilization, Health insurance

Annotation: This guide is for child welfare workers and other human service providers involved with foster children and children who are being adopted. The objective is to equip child welfare workers to obtain genetic family histories from clients with diverse cultural backgrounds. Genetic counselors and other human service professionals will also be able to use portions of the guide. The guide explains a procedure for obtaining family genetic histories, reviews basic genetics, describes genetic services, discusses attributes of cultural competence, presents a content and process framework for task-focused ethnocultural learning. Finally, it offers suggestions for working with interpreters, and gives pointers on interviewing involuntary clients. A list of ethnocultural and genetic resource organizations and a bibliography are provided. [Funded by the Maternal and Child Health Bureau]

Keywords: Child health, Cultural diversity, Culturally competent services, Family health, Genealogy, Genetic counseling, Genetic counselors, Genetics, Medical history

Annotation: This publication presents the proceedings from an international meeting on genetic services provision held prior to the 8th International Congress of Human Genetics on October 4, 1991, in six languages including English and Spanish. The fifteen papers included discuss progress in the diagnosis, prevention, and treatment of congenital disorders, as well as with organizational problems relevant to the delivery of genetic services and the associated social and ethical issues. Specific topics include the impact of genetic diseases and birth defects monitoring systems, thalassemia, Down syndrome, genetic screening, evaluation of services, and new technologies. Geographic areas covered include Latin America, Cyprus, Denmark, Cuba, Federal Republic of Germany, and Bahia, Brazil.

Contact: March of Dimes, 1550 Crystal Drive, Suite 1300, Arlington, VA 10605, Telephone: (888) 663-4637 Secondary Telephone: Web Site: http://www.marchofdimes.com Available in libraries.

Keywords: Congenital abnormalities, Genetic disorders, Genetic services, Genetics, International health, Non English language materials, Prenatal diagnosis, Research, Spanish language materials

Annotation: This directory lists genetic service providers in Texas. It is organized by category of service including medical genetics programs, biochemical genetics laboratories, cytogenetics laboratories, DNA laboratories, and sickle cell anemia programs. Each entry includes the program name, address, phone, program director, contact person, and a list of the clinical services provided. Many of the entries include information about cost reimbursement. [Funded by the Maternal and Child Health Bureau]

Contact: Texas Department of State Health Services, Children with Special Health Care Needs Services Program, MC 1938, PO Box 149347, Austin, TX 78714, Telephone: (512) 458-7355 Secondary Telephone: (800) 252-8023 Fax: (512) 458-7417 Web Site: http://www.dshs.state.tx.us/cshcn/default.shtm Available in libraries.

Keywords: DNA, Directories, Family support services, Genetic counseling, Genetic screening, Prenatal diagnosis, Sickle cell disease, Special health care needs