Skip Navigation

Strengthening the evidence for maternal and child health programs

Search Results: MCHLine

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 (51 total).

New Jersey Department of Health and Senior Services, Special Child, Adult, and Early Intervention Services. n.d.. Sickle cell disease: Information for school personnel (3rd ed.). Trenton, NJ: New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services, 29 pp.

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.

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

New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services. n.d.. Sickle cell disease: A family guide (3rd ed.). Trenton, NJ: New Jersey Department of Health and Senior Services, Special Child Health and Early Intervention Services, 28 pp.

Annotation: This guide, intended primarily for parents of children with sickle cell disease, includes information on how to manage this disease. The guide is divided into the following sections: (1) acknowledgements, (2) dedication, (3) how to use this guide, (4) introduction, (5) emergency telephone numbers, (6) warning signs, (7) common questions, (8) medical care, (9) new approaches to treatment, (10) daily living, (11) medical words, (12) sickle cell disease on the Internet, (13) sickle cell treatment centers, (14) directory of sickle cell treatment centers in New Jersey, and (15) directory of genetic counseling centers in New Jersey.

Keywords: Child health, Genetic counseling, Internet, Medical terminology, New Jersey, Patient care management, Patient education materials, Sickle cell disease, Therapeutics

Genetics in Primary Care Institute. 2014. A toolkit to improve care for pediatric patients with genetic conditions in primary care. Elk Grove Village, IL: Genetics in Primary Care Institute, 73 pp.

Annotation: This toolkit for primary care practices provides information and resources on identifying and caring for children and adolescents with genetic conditions. Topics include collecting family health history, identifying clients with suspected genetic conditions, and providing appropriate and coordinated care for clients with genetic conditions. Contents include action steps, communication tips, and additional resources. Examples from practices who participated in a quality improvement project are included. [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.

Keywords: Adolescents with special health care needs, Children with special health care needs, Genetic counseling, Genetic disorders, Genetic history, Genetic screening, Pediatric care, Program coordination, Service integration

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

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

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

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

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

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

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu Web Site: https://www.ncemch.org Available from the website.

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

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 Society of Genetic Counselors and Genetic Alliance. 2008. Making sense of your genes: A guide to genetic counseling. Chicago, IL: National Society of Genetic Counselors; Washington, DC: Genetic Alliance, 21 pp.

Annotation: This brochure for consumers provides information about genetic counseling. Topics include what genetic counseling is, why to see a genetic counselor, how to prepare for a genetic counseling visit, prenatal genetic counseling, general and pediatric genetic counseling, psychiatric genetic counseling, and cancer genetic counseling.

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: Cancer, Consumer education materials, Genetic counseling, Genetic disorders, Infants, Mental disorders, Prenatal care, Young children

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

Bach J. [2007]. Improving genetic health outcomes in Michigan through education, early identification, and enhanced integration of newborn screening information systems: 2002-2006 - Final report. Lansing, MI: Michigan Department of Community Health, 22 pp., plus appendices.

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, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 E-mail: mchgroup@georgetown.edu 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

Exe N, Ferguson H, Krokosky A, Sawyer S, Terry SF. [2007]. Genetic testing stories. Washington, DC: Genetic Alliance, 56 pp. (Monograph series no. 2)

Annotation: This publication consists of a collection of brief stores of individuals who have undergone genetic testing for a variety of conditions. Each story is told in the individual's own voice. Topics include carrier testing, diagnostic testing, gene mapping, predictive, and prognostic. For each topic there are several stories, each focusing on a different condition.

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: Personal narratives, Carrier state, Diagnostic techniques, Genetic counseling, Genetic disorders, Genetic screening

[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, Box 571272, Washington, DC 20057-1272, 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

National Heart, Lung, and Blood Institute, Division of Blood Diseases and Resources. 2004r. The management of sickle cell disease. (4th ed.). Bethesda, MD: National Heart, Lung, and Blood Institute, ca. 200 pp.

Annotation: This updated and expanded fourth edition of a clinical guide for health professionals was developed by leading pediatricians, nurses, hematologists, and internists. The guide summarizes collective experiences with various therapeutic regimens. It includes a new section on diagnosis and counseling, with information on neonatal screening and genetic counseling, Web listings, and other useful resources. The guide reflects the most recent advances and modifications in the clinical management of sickle cell disease as well as findings from the Preoperative Transfusion Study, the Prophylactic Penicillin Trial II, and the Multicenter Hydroxyurea Study. Also included is epidemiological data from the Cooperative Study of Sickle Cell Disease.

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: NHLBIinfo@nhlbi.nih.gov Web Site: http://www.nhlbi.nih.gov/health/infoctr/index.htm Available from the website. Document Number: NIH Pub. No. 04-2117.

Keywords: Counseling, Diagnosis, Disease management, Genetic counseling, Guidelines, Neonatal screening, Sickle cell disease, Therapeutics

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

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

Contact: Dartmouth Medical School, Interactive Media Laboratory, Colburn Hill, Suite 204, One Medical Center Drive, Lebanon, NH 03756, Telephone: (603)653-1500 Fax: (603)653-1515 E-mail: info@iml.dartmouth.edu Web Site: http://iml.dartmouth.edu Available from the website.

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

National Coalition for Health Professional Education in Genetics. 2002. Genetics and major psychiatric disorders: A program for genetic counselors. Lutherville, MD: National Coalition for Health Professional Education in Genetics, 1 CD-ROM.

Annotation: This program provides an introduction to psychiatric genetics, with a focus on the genetics of common complex disease, for genetics professionals. It provides an introduction to complex disease and an overview of psychiatry, then discusses research in psychiatric genetics, unipolar (major) depression, bipolar disorder, schizophrenia, issues in psychiatric genetic counseling, and the future. The CD-ROM can be used on Windows and Macintosh computers.

Contact: National Coalition for Health Professional Education in Genetics, 2360 West Joppa Road, Suite 320, Lutherville, MD 21093, Telephone: (410) 583-0600 Fax: (410) 583-0520 E-mail: info@nchpeg.org Web Site: http://www.nchpeg.org Available from the website.

Keywords: Audiovisual materials, Bipolar disorder, CD-ROMs, Depression, Genetics, Genetics counseling, Psychiatry, Research, Schizophrenic disorders

Wilker NL, Davidson ME, Holmes C, Isaacs C, Little B, Smith ACM, Stewart M. [1998]. Report to NYLCare Health Plans Medical Affairs Department: Opportunities to enhance NYLCare's genetics service delivery system. Washington, DC: Alliance of Genetic Support Groups, 26 pp.

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

Keywords: Case studies, Families, Genetic counseling, Genetic disorders, Genetic predisposition, Genetic services, Health services delivery

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

Rauch JB, Curtiss CR. 1992. Taking a family health/ genetic history: An ethnocultural learning guide and handbook. Baltimore, MD: University of Maryland at Baltimore, School of Social Work, 104 pp.

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

Texas Department of Health, Texas Genetics Network. 1992. Directory of genetic service providers. Austin, TX: Texas Department of Health, 89 pp.

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

    Next Page »

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.