Search Results: MCHLine

Annotation: This guide provides information to help health professionals in the state of Wisconsin comply with state requirements regarding the screening of infants for congenital or metabolic disorders and to better understand the Wisconsin Newborn Screening Program. The guide presents step-by-step guidelines on testing (including blood collection, specimen handling, and laboratory testing) and lists and describes the various newborn screening disorders (including symptoms and treatment). It explains how Wisconsin's screening program is funded; lists contact information for treatment centers; and provides the text of the state of Wisconsin's newborn screening statute.

Contact: Wisconsin Newborn Screening Laboratory, University of Wisconsin at Madison, 465 Henry Mall, Madison, WI 53706, Telephone: (608) 262-1293 Fax: (608) 262-3257 Web Site: http://www.slh.wisc.edu Available from the website.

• Guide
• Website

Keywords: Blood tests, Disorders, Infant health, Neonatal screening, Newborn infants, State legislation, State programs, Wisconsin

Annotation: This booklet for parents of newborns provides information about how to maintain the health and safety of both parents and infants. It includes space to fill in information to help plan for infants' health needs and provides resources for more information. Topics include newborn screening, immunizations, pertussis, planning for after delivery, postpartum mood disorders, infant crying, safe sleep and sudden infant death syndrome, choosing a child care provider, child safety seats, and special needs and early intervention. It is available in English and Spanish. [Funded by the Maternal and Child Health Bureau]

Contact: Texas Department of State Health Services, 1100 West 49th Street, Austin, TX 78756, Telephone: (512) 458-7111 Secondary Telephone: (512) 458-7708 Fax: (512) 458-7750 Web Site: http://www.dshs.state.tx.us Available from the website.

• English
• Spanish

Keywords: Car seats, Child care, Consumer education materials, Crying, Early intervention, Health, Immunization, Infant health, Infants with special health care needs, Medical records, Neonatal screening, Newborn infants, Parents, Postpartum depression, SIDS, Safety, Sleep position, Spanish language materials, Whooping cough

Annotation: In this online video recording, members of the Improving Hearing Screening & Intervention Systems (IHSIS) Learning Collaborative talk about their experiences improving newborn hearing screening and intervention services. Members of the Collaborative from the states of Alaska, Georgia, Ohio, Colorado, and Mississippi describe some of the challenges they've faced and the ways that they've been able to increase the numbers of newborns that receive screening and follow-up services. The video was recorded during an IHSIS learning session that took place in Denver, Colorado in November 2011. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: [email protected] Web Site: http://www.nichq.org Available from the website.

• Link

Keywords: Collaboration, Health care systems, Hearing screening, Intervention, Multimedia, Neonatal screening, Newborn infants, Program improvement, Quality assurance, State initiatives

Annotation: This orientation kit was developed to provide coordinators of early hearing detection and intervention (EHDI programs with information and tools to help facilitate their work. It is divided into ten sections, which cover technical support for EHDI, guidelines and position statements, hearing loss, program evaluation, newborn hearing screening, diagnostic hearing tests, medical evaluations, early intervention, early childhood hearing screening, and hot topics. Also included is a listing of additional resources; a newborn hearing screening training curriculum on DVD, an infant hearing guide on CD-ROM, a pamphlet for parents on parent-child communication, and a brochure on early identification of hearing loss.

Contact: National Center for Hearing Assessment and Management, Utah Sate University, 2615 Old Main Hill, Logan, UT 84322, Telephone: (435) 797-3584 Web Site: http://www.infanthearing.org

• Updated Version

Keywords: Evaluation, Hearing screening, Interventions, Neonatal screening, Newborn infants, Professional education, Program development, Program management, Training

Annotation: This book is written for expecting or new parents of premature babies. It is divided into the following sections: before birth, in the hospital, a life together, and other considerations. Before birth outlines some known causes of premature labor and birth and how to prevent them. Topics discussed in the second part include the premature delivery, the neonatal intensive care unit at the hospital, testing and possible complications that occur in the first week, settling down in the hospital, and if baby needs surgery. Part three covers decisions and preparations for taking baby home, what to expect and watch for during early development and possible consequences of prematurity. Part four talks about losing a premature baby and ways of coping with grief and what special arrangements should be expected. Also discussed are examples of famous premature babies that thrived. The appendices include conversion charts, growth charts, a schedule for multiples, cardiopulmonary resuscitation - birth to one year, and resources. A glossary and an index conclude the text.

Contact: March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, Telephone: (914) 997-4488 Secondary Telephone: Web Site: http://www.marchofdimes.com Available in libraries. Document Number: ISBN 0-671-03491-X.

Keywords: Consumer education materials, Infant death, Infant development, Infant health, Low birthweight, Neonatal intensive care units, Neonatal screening, Parent education, Pregnancy complications, Pregnancy outcome, Premature infant diseases, Premature infants, Premature labor, Preterm birth

Annotation: This website provides information about the 2010 Newborn Screening and Genetic Testing Symposium held in Orlando, Florida, on May 3-6, 2010. The symposium brought together almost 400 laboratories, follow-up professionals, and metabolic specialists from around the world. The site presents the symposium schedule and provides links for presentations that have been authorized for posting. Meeting session topics included health information technology, education, program quality improvement, laboratory quality improvement, international perspectives, old conditions, new information, and candidate conditions.

Contact: Association of Public Health Laboratories, 8515 Georgia Avenue, Suite 700 , Silver Spring, MD 20910, Telephone: (240) 485-2745 Secondary Telephone: (240) 485-2747 Fax: (240) 485-2700 E-mail: [email protected] Web Site: http://www.aphl.org Available from the website.

• Link

Keywords: Conference proceedings, Education, Genetic testing, Health, Information, Laboratory techniques, Neonatal screening, Programs, Technology

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.

• PDF

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

Annotation: The purposes of this paper are to (1) review the issues facing state newborn screening programs related to the retention and use of residual dried blood spot specimens and (2) to lay the foundation for developing national guidance to states in this area. Topics include ethical, legal, and social issues; education, awareness, and ensuring the public trust; and financial considerations. [Funded by the Maternal and Child Health Bureau]

Contact: U.S. Advisory Committee on Heritable Disorders in Newborns and Children, U.S. Maternal and Child Health Bureau, Parklawn Building, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-1080 Web Site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/ Available from the website.

• PDF

Keywords: Education, Ethics, Financing, Guidelines, Legal issues, Neonatal screening, Programs

Annotation: This packet of materials was prepared for the Maternal and Child Health Federal/State Partnership Meeting,October 20, 2010. It contains these documents: (1) Locating the Future in the Past: A History of Maternal and Child Health Programs in the U.S. by Jeffrey Brosco; (2) Rethinking MCH: The Life Course Model as an Organizing Framework--Concept Paper by MCHB;(3) Caring for Infants Then and Now: 1935 to the Present, by Kimberly Deavers and Laura Kavanagh; (4) Maternal Mortality in the United States, 1935-2007: Substantial Racial/Ethnic, Socioeconomic and Geographic Disparities Persist, by Gopal Singh; (5) Infant Mortality in the United States, 1935-2007: Over Seven Decades of Progress and Disparities, by Gopal Singh and Peter van Dyck; (6) Child Mortality in the United States, 1935-2007: Large Racial and Socioeconomic Disparities Have Persisted Over Time, by Gopal Singh; (7) Youth Mortalaity in the United States, 1935-2007: Large and Persistent Disparities in Injury and Violent Deaths, by Gopal Singh; (8) Childhood Obesity in the United States, 1976-2008: Trends and Current Racial/Ethnic, Socioeconomic and Georgraphic Disparities, by Gopal Kingh and Michael Kogan; (9) Newborn Screening Services: Then and Now, by Michele Lloyd-Puryear and Bradford Therrell Jr.; and (10) 75 Celebrate, by MCHB.

Contact: U.S. Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Rockville, MD 20857, Telephone: (301) 443-2170 Web Site: https://mchb.hrsa.gov

Keywords: MCH programs, Maternal mortality, Adolescent mortality, Anniversaries, Block grants, Child mortality, Children, Conference proceedings, History, Infant mortality, Infants, Life course, MCH services, Neonatal screening, Obesity, Social Security Act, Title V, Women

Annotation: This brief summarizes effective and efficient interventions provided by state maternal and child health (MCH) programs to improve the lives of mothers, children, and families, and that merit increased national investment. Topics include the Title V MCH Block Grant program; improving birth outcomes and maternal health; breastfeeding promotion; smoking cessation for pregnant women and mothers; newborn screening; ensuring childhood immunizations; Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) for all children; early childhood programs; children's access to a medical home; preventing childhood injury; promoting adolescent health; adolescent pregnancy prevention and family planning services; and screening and treatment of sexually transmitted infections.

Contact: Association of Maternal and Child Health Programs, 1825 K Street, N.W., Suite 250, Washington, DC 20006-1202, Telephone: (202) 775-0436 Fax: (202) 478-5120 E-mail: [email protected] Web Site: http://www.amchp.org Available from the website.

• PDF

Keywords: Adolescent health, Breastfeeding promotion, Child health, Cost effectiveness, EPSDT, Families, Immunization, Injury prevention, Maternal health, Medical home, Neonatal screening, Pregnancy outcome, Pregnant women, Prevention services, Preventive health services, Sexually transmitted diseases, Smoking cessation, Smoking during pregnancy

Annotation: This document from the U.S. Senate Committee on Health, Education, Labor, and Pensions, reports on the hearing and deliberations of Senate Bill S.1858, the Newborn Screening Saves Lives Act of 2007, to amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes. Contents include the purpose and need for the legislation, a summary, a history of the legislation and votes in the Committee, explanations of the bill and Committee views, provides a cost estimate, reviews the application of law to the Legislative Branch, provides a regulatory impact statement and a section-by-section analysis, and changes in existing law. Related information on the bill's summary and status and full-text are also provided on the Web site.

Contact: U.S. Government Publishing Office, 732 North Capitol Street, N.W., Washington, DC 20401, Telephone: (202) 512-1800 Secondary Telephone: (866) 512-1800 Fax: (202) 512-2104 E-mail: [email protected] Web Site: http://www.gpo.gov Available from the website.

• Html Version

Keywords: Congressional committees, Costs, Federal legislation, Neonatal screening, Newborn infants

Annotation: This web resource provides information from the 2009 Newborn Screening Summit held on December 7-8, 2009, in Bethesda, Maryland. Summit topics included family perspectives; technology; information and risk communication; advocacy; storage and use of residual blood spots; decision-making in public, population, and private health; childhood screening; effective follow-up; health information exchange; the newborn screening system clearinghouse, portal, and transitional network; pros and cons of consent; benefit in newborn and childhood screening; defining abnormal; and strategic thinking about newborn screening. The site provides links to the summit agenda, a webcast recording, and materials.

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.

• Link

Keywords: Advocacy, Children, Communication, Conference proceedings, Consent, Decision-making, Families, Health, Infants, Neonatal screening, Public health, Screening, Technology

Annotation: This document provides the full-text of the Newborn Screening Saves Lives Act, as amended and passed, to amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes.

Contact: U.S. Government Publishing Office, 732 North Capitol Street, N.W., Washington, DC 20401, Telephone: (202) 512-1800 Secondary Telephone: (866) 512-1800 Fax: (202) 512-2104 E-mail: [email protected] Web Site: http://www.gpo.gov Available from the website.

• Html Version
• Pdf Version

Keywords: Federal legislation, Neonatal screening, Newborn infants

Annotation: This document describes (1) the current practice of newborn screening and the ethical challenges that come from trying to reap the benefits of screening while minimizing the harm; (2) the guiding ethical principles of the last forty years, and the debate concerning their alteration; (3) a vision of the future of newborn screening given the advances of genomic medicine; and (4) the controversy over whether states should have mandatory screening programs, elective programs, or some combination of the two. The document concludes with personal statements by prominent experts in the field of newborn screening.

Contact: President's Council on Bioethics, 1425 New York Avenue, N.W.***DEFUNCT***, Washington, DC 20005, Telephone: (202) 296-4669 E-mail: [email protected] Available from the website.

• Full Report
• Appendix

Keywords: Ethics, Genetic screening, Neonatal screening, Newborn infants, Program evaluation, Public policy

Annotation: This manual for heath professionals provides information about Delaware's newborn screening program. The manual provides background information about newborn screening and about the program, lists staff and contact information, provides information about disorders that are screened for in the state, and offers screening form information, newborn screening program requirements, and specimen timing and specimen collection information.

Contact: Delaware Health and Social Services, Division of Public Health, Jesse Cooper Building, 417 Federal Street, Dover, DE 19901, Telephone: (302) 744-4700 Secondary Telephone: (888) 459-2943 Fax: (302) 739-6659 E-mail: [email protected] Web Site: http://www.dhss.delaware.gov/dhss/dph/ Available from the website.

• PDF

Keywords: Delaware, Disorders, Neonatal screening, State programs

Annotation: This booklet is designed to help prenatal educators inform expectant parents about newborn screening. The booklet provides background information about newborn screening and discusses what parents need to know, credible resources for parents, the 29 disorders recommended for screening by the American College of Medical Genetics, and activities to incorporate into classes. A card about newborn screening that can be cut out and and placed in a baby book is included. [Funded by the Maternal and Child Health Bureau]

Contact: New England Genetics Collaborative , , 10 West Edge Drive, Suite 101, Durham, NH 03284, Telephone: (603) 653-6044 Web Site: http://www.negenetics.org Available from the website.

• PDF

Keywords: Consumer education materials, Diagnosis, Genetic disorders, Neonatal screening, Newborn infants, Parent education, Parent education programs

Annotation: This final report focuses on the Universal Newborn Hearing Screening and Intervention (UNSHI) program created following legislation passed by Congress in 1999. The report presents the results of an analysis of survey data from all UNSHI programs receiving funding from the Maternal and Child Health Bureau and on information collected during site visits. The report includes 10 chapters discussing a rationale for newborn hearing screening; study methods; program outcomes, models, and development; how program are building service system capacity and working to improve provider knowledge; challenges families have in obtaining services; and data and tracking systems. [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 care, Evaluation, Federal programs, Final reports, Health services delivery, Hearing screening, Intervention, Neonatal screening, Outcome evaluation, Program development, Site visits, State programs

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 guide describes the metabolic and genetic newborn screening program in Tennessee. Topics covered include (1) Tennessee law; (2) excerpts taken from rules and regulations; (3) hospital responsibility; (4) state laboratory and maternal and child newborn screening follow-up section responsibilities; (5) weekend and holiday calls; (6) primary care provider responsibilities and follow-up; (7) list of endocrinologists, genetic, and sickle cell centers; and (8) metabolic and genetic disorders.

Contact: Tennessee Department of Health, Maternal and Child Health Section , Fifth Floor, Cordell Hull Building, 425 Fifth Avenue, North, Nashville, TN 37247, Telephone: (615) 741-7353 Fax: (615) 741-1063 E-mail: Theodora. [email protected] Web Site: http://www.state.tn.us/health/ Available from the website.

• PDF

Keywords: Genetic disorders, Genetic screening, Hospitals, Legislation, Metabolic diseases, Neonatal screening, Primary care, Screening tests, State programs, Tennessee

Annotation: This edition, for health care providers in the United Kingdom, provides guidelines on parents' needs after the loss of a pregnancy or child for whatever reason it occurred, laws to be applied and when they do not apply, the impact the loss on parents and families, and the importance of the care that is offered. Topics include providing inclusive care; holistic care; loss and grief; communication; communication across language and other barriers; termination of pregnancy for reasons other than abnormality; antenatal screening, diagnostic tests, and procedures; continuing the pregnancy; losses in pregnancy; care in neonatal units, transfer to the mortuary and post mortem investigations; funerals and memorials; support and training for staff; guidance for health care providers, and legal issues, regulations, and professionals standards concerning the termination of pregnancy.

Contact: SANDS, 28 Portland Place, London, ENGLAND W1B 1LY, Web Site: http://www.uk-sands.org Available in libraries. Document Number: ISBN(13) 978-0-9554243-2-8 ISBN(10) 0-9554243-2-1.

Keywords: Bereavement, Fetal death, Grief, Guidelines, Infant death, Neonatal death, Neonatal intensive care, Neonatal screening, Patient advocacy, Physician patient relations, Postpartum care, Pregnancy loss, Prenatal screening, United Kingdom