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Biblioteka Flavia o zespole Downa

grudzień 25, 2009 by
Kategoria: książki popularno-naukowe

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Flavio korzysta z różnych źródeł w Europie, stąd pojawiają się różne języki i różne wydawnictwa. Najchętniej korzysta z dokumentów francuskich publikowanych w:

Livret de suivi medical on  http://www.trisomie21-france.org/Publications/Suivi-medical.htm

i we Włoszech: Linee Guida Multidisciplinari per l’Assistenza Integrata alle Persone con Sindrome di Down e alle loro Famiglie. Istituto Superiore di Sanità. Maggio 2007 http://www.iss.it/lgmr/limr/cont.php?id=163&lang=1&tipo=5  

 

Z książek poleca:

Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child.1999;81: 271-5

AAP A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 pt2):1304 –1306

Scal P, Ireland M. Addressing Transition to Adult Health Care for Adolescents With Special Health Care Needs Pediatrics, June 1, 2005; 115(6): 1607 – 1612.

McDonagh J. E, Viner R. M. Lost in transition? Between paediatric and adult services.
BMJ, February 25, 2006; 332(7539): 435 – 436.

Slap G. B. Promoting Lifelong Health for Adolescents and Young Adults With Special Health Care Needs. Pediatrics, November 1, 2009; 124(5): 1469 – 1470.


American Journal of Medical Genetics Part C: Seminars in Medical Genetics
Volume 142C, Issue 3 (15 August 2006) Special Issue: Current Perspectives on Down Syndrome: Selected Medical and Social Issues . Issue Edited by Priya S. Kishnani, Blythe G. Crissman. :


Dent KM, Carey JC.
Breaking difficult news in a newborn setting: Down syndrome as a paradigm.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):173-9. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17048355&query_hl=14&itool=pubmed_docsum

Cohen WI.
Current dilemmas in Down syndrome clinical care: celiac disease, thyroid disorders, and atlanto-axial instability.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):141-8. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16838307&query_hl=17&itool=pubmed_docsum
Dixon N, Kishnani PS, Zimmerman S.
Clinical manifestations of hematologic and oncologic disorders in patients with Down syndrome.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):149-57. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17048354&query_hl=21&itool=pubmed_docsum
Heller JH, Spiridigliozzi GA, Crissman BG, Sullivan-Saarela JA, Li JS,
Kishnani PS.
Clinical trials in children with Down syndrome: issues from a cognitive research perspective.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):187-95. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16838317&query_hl=28&itool=pubmed_docsum

Shott SR.
Down syndrome: common otolaryngologic manifestations.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):131-40. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16838306&query_hl=30&itool=pubmed_docsum
Crissman BG, Worley G, Roizen N, Kishnani PS.
Current perspectives on Down syndrome: selected medical and social issues.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):127-30. Review. No abstract
available.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17048353&query_hl=12&itool=pubmed_docsum
Capone G, Goyal P, Ares W, Lannigan E.
Neurobehavioral disorders in children, adolescents, and young adults with Down syndrome.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):158-72. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16838318&query_hl=33&itool=pubmed_docsum
Gardiner K, Costa AC.
The proteins of human chromosome 21.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):196-205.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17048356&query_hl=35&itool=pubmed_docsum
Skotko BG, Levine SP.
What the other children are thinking: brothers and sisters of persons with Down syndrome.
Am J Med Genet C Semin Med Genet. 2006 Aug 15;142(3):180-6. Review.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16823778&query_hl=38&itool=pubmed_docsum

Cochrane Database of Systematic Reviews 2009, Issue 1:

Mohan M, Bennett C, Carpenter PK. Rivastigmine for dementia in people with Down syndrome.
Cochrane Database Syst Rev. 2009 Jan 21;(1):CD007658. Review.
 
Mohan M, Bennett C, Carpenter PK. Memantine for dementia in people with Down syndrome.
 Cochrane Database Syst Rev. 2009 Jan 21;(1):CD007657. Review.
 
Mohan M, Bennett C, Carpenter PK. Galantamine for dementia in people with Down syndrome. 
Cochrane Database Syst Rev. 2009 Jan 21;(1):CD007656. Review.
 

Mohan M, Carpenter PK, Bennett C. Donepezil for dementia in people with Down syndrome. Cochrane Database Syst Rev. 2009 Jan 21;(1):CD007178. Review.

Roizen NJ, Patterson D. Down’s syndrome. Lancet. 2003 Apr 12;361(9365):1281-9.

http://www.conosciamocimeglio.it/documenti/controlli.html?id=79 traduzione italiana

Hawli Y, Nasrallah M, El-Hajj Fuleihan G.

Endocrine and musculoskeletal abnormalities in patients with Down syndrome. Nat Rev Endocrinol. 2009 Jun;5(6):327-34.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Hawli%20Y%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus

Chicoine B, McGuire D, Rubin S. Adults with Down Syndrome: Specialty Clinic Perspectives Originally published in Dementia, Aging and Intellectual Disabilities: A Handbook

ed. by Janicki and Dalton (Taylor and Francis, 1999) http://www.ds-health.com/adults.htm

van Allen MI, Fung J, Jurenka SB. Health care concerns and guidelines for adults with Down syndrome.Am J Med Genet. ( Semin. Med. Genet) 1999 Jun 25;89(2):100-10. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=10559765&query_hl=22&itool=pubmed_docsum

Comune di Roma. Sistema Statistico Nazionale. Ufficio di Statistica e Censimento. Le città nella Città. 2004

Head E, Lott IT, Patterson D, Doran E, Haier RJ. Possible compensatory events in adult Down syndrome brain prior to the development of Alzheimer disease neuropathology: targets for nonpharmacological intervention. J Alzheimers Dis. 2007 Mar;11(1):61-76 http://www.ncbi.nlm.nih.gov/pubmed/17361036?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=67

Linee Guida Multidisciplinari per l’Assistenza Integrata alle Persone con Sindrome di Down e alle loro Famiglie. Istituto Superiore di Sanità. Maggio 2007 http://www.iss.it/lgmr/limr/cont.php?id=163&lang=1&tipo=5

Comune di Roma Ufficio di Statistica Servizio Studi Socio-Economici . "Indagine sulla qualità di vita delle persone con sindrome di Down residenti sul territorio del Comune di Roma". 2007.

http://www.comune.roma.it/was/repository/ContentManagement/information/P488537847/NoiAltricop.pdf

Luchino F, Bertoli M, Calignano MT, Celani G, De Grossi G, Digilio MC, Fermariello C, Iraci G, Loffredo G, Marchese A, Mazotti S, Menghi B, Pierannunzio D, Razzano E, Tiano C, Volpe R, Zambon A, Zampino G. LISU (LImiti SUperabili) Indagine sulla qualità di vita delle persone con sindrome di Down residenti nel Comune di Roma. Riflessioni su un censimento condotto nel Comune di Roma. Quaderni acp 2009; 16(5): 194-202. http://www.quaderniacp.it/ “Survey on the quality of life of people with Down syndrome residing in the City of Rome. Reflections on a census conducted in the City of Rome”. Jest tłumaczenie angielskie

Skotko BG, Kishnani PS, Capone GT; Down Syndrome Diagnosis Study Group. Prenatal diagnosis of Down syndrome: how best to deliver the news. Am J Med Genet A. 2009 Nov;149A(11):2361-7.

Skotko BG, Capone GT, Kishnani PS; Down Syndrome Diagnosis Study Group. Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news. Pediatrics. 2009 Oct;124(4):e751-8. Epub 2009 Sep 28. Review.

Wiseman FK, Alford KA, Tybulewicz VL, Fisher EM. Down syndrome–recent progress and future prospects. Hum Mol Genet. 2009 Apr 15;18(R1):R75-83. Review. http://www.ncbi.nlm.nih.gov/pubmed/19297404?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=5

Morris JK, Alberman E. Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register. BMJ. 2009 Oct 26;339:b3794. doi: 10.1136/bmj.b3794.PMID: 19858532 [PubMed – in process]

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