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Bibliographies:  Phenylketonuria (PKU)

1990-2004

Prepared
April 2004

The purpose of this bibliography is to help consumers and professionals identify books, journal articles, journal titles, articles on the web, and/or web sites, that discuss the subject of Phenylketonuria (PKU) . Not all of the listed materials are owned by LINC, and, not all of the materials have been reviewed by staff. Materials have been included based on publication date and perceived relevancy, and includes those publications from 1990-2004.

Books:

Askinazi, Lauren S. ((2002). Parental perceptions of cognitive skills used in daily functioning in children with PKU and the relationship to IQ, school grades, and blood phenylalanine measures. Philadelphia, PA: MCP Hahnemann University, College of Nursing and Health Professions, Dept. of Clinical and Health Psychology.

Bellenir, Karen. (1996). Genetic disorders sourcebook: basic information about heritable diseases and disorders such Down Syndrome, PKU, hemophilia, Von Willebrand disease, Gaucher disease, Tay-Sachs disease, and sickle cell anemia. Detroit, Mich.: Omnigraphics.

Collaborative study of children treated for phenylketonuria (PKU) in the Federal Republic of Germany. [Berlin ; Secaucus, NJ]: Springer International.

Diamond, Adele. (1997). Prefontal cortex cognitive deficits in children treated early and continuously for PKU. Chicago: University of Chicago Press.

Education of students with phenylketonuria (PKU): information for teachers, administrators and other school personnel. (1991?). Bethesda, MD: National Institute of Child Health and Human Development (NIH).

Koch, Jean. (1997). Robert Guthrie—the PKU story: crusade against mental retardation. Pasadena, Calif.: Hope Publishing House.

Koch, Richard, De la Cruz, Felix F., Azen, Colleen G. (2003). The maternal phenylketonuria collaborative study: new developments and the need for new strategies: April 11-12, 2003 Lister Hill Auditorium, Bethesda, MD. Evanston, Ill.: American Academy of Pediatrics.

National Institutes of Health. (2001). Report of the NIH consensus development conference on Phenylketonuria (PKU). Bethesda, MD: The Institutes.

Schuett, Virginia E. (1997). Low protein cookery for phenylketonuria.
Madison: University of Wisconsin Press.

Schuett, Virginia E., Taylor, Margaret, Aldworth, Susan. (1998). You and PKU. Seattle, WA: [s.n.]. (For juvenile audience).

Wessell, Kenneth W., Sandrone, Connie, Vojt, Timothy. (1991). A journey into the world of PKU. Baltimore, MD: [s.n.]. (For juvenile audience).

Videos:

Connecticut Children’s Medical Center. (1999). Now we’re cooking: quick and easy recipes for PKU cooking. Hartford, Conn: Connecticut Children’s Medical Center & University of Connecticut Health Center.

Dunn, Sean P. (1990s). Maternal PKU: a crisis on the horizon. Boston, MA: Fanlight Productions.

Phenylketonuria. (2001). Princeton, NJ: Films for the Humanties.

Journal Articles:

Baieli, Sabrina ; Pavone, Lorenzo ; Meli, Concetta. (2003). Autism and phenylketonuria. Journal of Autism and Developmental Disorders, 33(2), 201-204.

Landolt, MA and others. (2002). Quality of life and psychological adjustment in children and adolescents with early treated phenylketonuria can be normal. Journal of Pediatrics, 140(5), 516-521.

Letcher, Marshall G. Phenylketonuria. In Blachford, Stacey L., ed. (2001). The Gale Encyclopedia of Genetic Disorders. Farmington Hills, MI Gale Group.

Maguire, J. (1991). All about artificial sweetners. First for Women, 3(39), 34.

Merrick, Joav ; Aspler, Shoshana ; Schwarz, Gerard. (2001). Should adults with phenylketonuria have diet treatment? Mental Retardation, 39(3), 215-217.

Miller, Julie Ann. (1995). Strictest diet avoids subtle detriments of PKU: effects on prefrontal cortex; research by Adele Diamond. BioScience, 45, 244-245.

Muntau, AC and others. (2002). Tetrahydrobiopterin as an alternative treatment for mild phenylketonuria. New England Journal of Medicine, 347(26), 2122-2132.

Robinson, M and others. (2000). Increased risk of vitamin B12 deficiency in patients with phenylketonuria on an unrestricted or relaxed diet. Journal of Pediatrics, 136(4), 545-547.

Shaffer, M. (1994). Long-term PKU diet warranted. Medical Tribune for the Family Physician, 35(24), 1,6.

Van Spronsen, FJ and others. (2001). Phenylketonuria: tyrosine supplementation in phenylalanine-restricted diets. American Journal of Clinical Nutrition, 73(2), 153-157.

Microform:

National Institutes of Health. (2001). Report of the NIH consensus development conference on Phenylketonuria (PKU). Bethesda, MD: The Institutes. (GovDoc on microfiche, HE 20.3352:P 52).

Articles on the Web:

Mayo Clinic Staff. (2004). Phenylketonuria. Retrieved April 12, 2004, from http://www.mayoclinic.com/invoke.cfm?id=DS00514

Phenylketonuria. Online Mendelian Inheritance in Man (OMIM). http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=261600

Phenylketonuria (PKU). The Arc. Retrieved April 14, 2004, from http://www.thearc.org/faqs/pku.html

Phenylketonuria (PKU). Family Village. Retrieved April 14, 2004, from http://www.familyvillage.wisc.edu/lib_pku.htm

Phenylketonura (PKU). Texas Dept. of Health, Newborn Screening Case Management Program. http://www.tdh.state.tx.us/newborn/pku.htm

PKU. (2001). March of Dimes. Retrieved April 14, 2004, from http://search.marchofdimes.com/cgi-bin/MsmGo.exe?grab_id=68&page_id=4587776&query=pku&hiword=pku+

What is PKU? University of Washington, PKU Clinic, Seattle. Retrieved April 14, 2004, from http://depts.washington.edu/pku/whatis.html

Journals:

National PKU News: news and information about phenylketonuria. Seattle, WA: National PKU News. http://www.hertsfa.com/~pkunews/index.htm


Texas PKU Connections: reaching out and connecting the PKY community in Texas. Austin, TX: Newborn Screening Case Management, Bureau of Children's Health, Texas Dept. of Health.

Bibliographies:

Patrias, Karen, De la Cruz, Felix F. (2000). Phenylketonuria: screening and management: January 1980 through July 2000, plus selected earlier citations: 3,394 citations. Bethesda, MD: U.S. Dept. of Health and Human Services, Public Health Services, National Institutes of Health, National Library of Medicine, Reference section. Retrieved April 13, 2004, from http://www.nlm.nih.gov/pubs/cbm/pku.html

Web sites:

Children’s PKU Network. http://www.pkunetwork.org

Mid-Atlantic Connection for PKU and Allied Disorders, Inc. http://www.macpad.org

National Coalition for PKU & Allied Disorders. http://www.pku-allieddisorders.org

NSPKU.org http://web.ukonline.co.uk/nspku/

Phenylalanine Hydroxylase Locus Knowledge PAHdb. http://www.pahdb.mcgill.ca/?Topic=About&Section=CuratorsPage&Page=0

 

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