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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.

Displaying records 1 through 10 (10 total).

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

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

Genetics in Primary Care Institute. 2012-. Time out for genetics webinar series. Chicago, IL: National Center for Medical Home Implementation, multiple items.

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.

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

National Heart, Lung, and Blood Institute Health Information Center. 2010. A century of progress: Milestones in sickle cell disease research and care. Bethesda, MD: National Heart, Lung, and Blood Institute Health Information Center, 2 pp.

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.

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

Lloyd-Puryear M, Therrell BL. 2010. Newborn screening services: Then and now. Rockville, MD: U.S. Maternal and Child Health Bureau, 4 pp. (75 Title V anniversary celebration)

Annotation: This report discusses the history of newborn screening and genetic services in the United States. It discusses the development of the state-based newborn screening programs, highlights conditions for which tests exist, and lists the average number of newborn screening conditions required in United States programs. [Funded by the Maternal and Child Health Bureau]

Contact: U.S. Health Resources and Services Administration, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (888) 275-4772 Secondary Telephone: (877) 464-4772 Fax: (301) 443-1246 E-mail: [email protected] Web Site: http://www.hrsa.gov Available from the website.

Keywords: Genetic screening, History, Neonatal screening, Newborn infants, State MCH programs

Eanet K, Rauch JB. 2000. Genetics and genetic services: A child welfare workers' guide. Washington, DC: Child Welfare League of America, 209 pp.

Rushton AR. 1994. Genetics and medicine in the United States, 1800-1922. Baltimore, MD: Johns Hopkins University Press, 224 pp.

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

Rauch JB, ed. 1990. Genetics and adoption: Every child potentially a special needs child. Baltimore, MD: University of Maryland at Baltimore, School of Social Work, 161 pp.

Annotation: This publication is based on papers and workshops given at an interdisciplinary conference held in Washington, DC, May 3–5, 1990. The conference was co-sponsored by the University of Maryland at Baltimore School of Social Work and the Graduate School, Division of Human Genetics and the Mid-Atlantic Regional Human Genetics Network with support from the Genetic Services Branch of the Maternal and Child Health Bureau and local chapters of the March of Dimes. The conference focused on the provision of genetic information in special needs adoption. Plenary sessions addresses the contribution of genetic services to promoting the health of special needs adoptees, ethical issues, models for teaching social workers about genetics, and the delivery of genetic services to foster children and special needs adoptees. The workshop topics include maternal substance abuse, basic genetic concepts, special needs adoption, and genetic counseling and psychiatric disorders. Within the appendices are conference recommendations, model state legislation, and a model background information form. [Funded by the Maternal and Child Health Bureau]

Keywords: Adoption, Child health, Children with special health care needs, Genetic counseling, Genetic services, Medical history

Wisconsin Clinical Genetics Center and Waisman Center on Mental Retardation and Human Development. 1984. Genetic family history: An aid to better health of adoptive children. Washington, DC: National Center for Education in Maternal and Child Health, 122 pp.

Annotation: This conference, put on by the Continuing Education in Genetics for Adoption Workers project, included sessions on historical and legal aspects, ethical and social work practice issues, and clinical genetics. Specific topics were the Wisconsin adoption records law, views by a consumer panel of adoptees and adoptive parents on the importance of the genetic history for both medical and social reasons, principles of genetics, genetics counseling, social work practice issues, obtaining a genetic history, support services for families with a genetic diagnosis, working with resistant and reticent clients, and prenatal diagnosis.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available for loan.

Keywords: Adoption, Genealogy, Genetic counseling, Medical history
   

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.