Revisioni della letteratura in riferimento ai controlli di salute utili per le persone con la sindrome Down
sommario
ultimo aggiornamento 10 Luglio 2004

È importante riferirsi sempre ai controlli di salute raccomandati per tutti i bambini, perché sono la base comune, in cui i controlli specifici per la sindrome si inseriscono come una semplice estensione.

Alcuni schemi riassuntivi sono suggeriti ai punti (7), (8), (12) in inglese, e (14) in spagnolo.
Sono disponibili testi o commenti in italiano ai punti: (15), (5), (2), (3)

Ai medici di famiglia iscritti a www.conosciamocimeglio.it con la persona Down che seguono, possiamo inviare le fotocopie degli articoli “ full text non free in inglese”, per esclusivo uso personale ai fini assistenziali.

  1. Roizen NJ, Patterson D.
    Down's syndrome.
    Lancet. 2003 Apr 12;361(9365):1281-9. Review.
    Department of Pediatrics, SUNY Upstate Medical University, Syracuse, NY 13210, USA. roizenn@upstate.edu <roizenn@upstate.edu>
    (Full text non free, inglese. Disponibile)
    Revisione di straordinaria importanza.
    È disponibile per le famiglie e i medici di famiglia la traduzione italiana, a cura di Maria Grazia Dell'Orto, pediatra, Ambulatorio del bambino con sindrome di Down della Clinica Pediatrica dell'Università di Milano Bicocca - Ospedale San Gerardo di Monza
    Novembre 2004

     
  2. Roizen NJ.
    Medical care and monitoring for the adolescent with Down syndrome.
    Adolesc Med. 2002 Jun;13(2):345-58, vii. Review.
    Division of Neuroscience, Department of Pediatrics, Upstate Medical University, Syracuse, New York 13210, USA.
    Commento in italiano
     
  3. Smith DS.
    Health care management of adults with Down syndrome.
    Am Fam Physician. 2001 Sep 15;64(6):1031-8. Review.
    Department of Family and Community Medicine, Medical College of Wisconsin, Milwaukee 53226, USA.
    Free full text
    Commento in italiano

     
  4. Van Riper M, Cohen WI.
    Caring for children with Down syndrome and their families.
    J Pediatr Health Care. 2001 May-Jun;15(3):123-31. Review.
    College of Nursing, The Ohio State University, 1585 Neil Ave., Columbus, OH 43210, USA.
    (Full text non free, inglese. Disponibile)
    Revisione diretta alla scuola infermiere, che riassume le raccomandazioni
    dell’ American Academy of Pediatrics. (vedi successivo n°5) e di Cohen WI, Down Syndrome Quarterly, Volume 4, Number 3, September, 1999. Review. (vedi successivo n°12)
     
  5. American Academy of Pediatrics. Committee on Genetics.
    Health supervision for children with Down syndrome.
    Pediatrics. 2001 Feb;107(2):442-9.
    Free full text
    Guida alla lettura in italiano per le famiglie
     
  6. Marder E, Dennis J.
    Medical management of children with Down’s syndrome
    Current Paediatrics. 2001; 11, 57d63
    Free full text
     
  7. DSMIG 2000. Down's Syndrome. Suggested schedule for Health Checks
    Encouraging best practice medical care for people with Down's Syndrome
    Detailed recommendations for Medical Surveillance Essentials for children with Down's syndrome are available.
    For further information contact your local community paediatrician.
     
  8. DSMIG 2000. Down's Syndrome. Child Development
    Adapted with permission from Cunningham 1988 Down's Syndrome - An Introduction for Parents. Souvenir Press Ltd. Human Horizon Series.
     
  9. van Allen MI, Fung J, Jurenka SB.
    Health care concerns and guidelines for adults with Down syndrome.
    Am J Med Genet. 1999 Jun 25;89(2):100-10.
    mvan@interchange.ubc.ca
    (Full text non free, inglese. Disponibile)
    Studio osservazionale prospettico condotto su 38 adulti istituzionalizzati, con controlli annuali per 12 anni, dall'1981 al 1992, che sottolinea l'importanza di controlli annuali anche negli adulti, che possono presentare sintomi clinici di anomalie curabili, ma potenzialmente confuse con sintomi precoci di demenza, se trascurati.
     
  10. Verma IC, Kabra M, Gangakhedkar AK.
    Optimal care for children with Down syndrome in India.
    Indian J Pediatr. 1996 Jan-Feb;63(1):121-6. Review.
    Department of Pediatrics, All India Institute of Medical Sciences, New Delhi.
     
  11. Saenz RB.
    Primary care of infants and young children with Down syndrome.
    Am Fam Physician. 1999 Jan 15;59(2):381-90, 392, 395-6. Review.
    Department of Family Medicine, University of Mississippi Medical Center, Jackson 39216, USA.
    Free full text
     
  12. Cohen WI
    Health Care Guidelines for Individuals with Down Syndrome: 1999 Revision (Down Syndrome Preventive Medical Check List) USA Down Syndrome Medical Interest Group.
    Down Syndrome Quarterly, Volume 4, Number 3, September, 1999. Review.
    Free full text
    http://www.denison.edu/collaborations/dsq/health99.html
    http://www.denison.edu/collaborations/dsq/recordsheet.html
    http://www.ds-health.com/recordsheet1.htm
    http://www.ds-health.com/recordsheet2.htm

     
  13. Pueschel SM.
    Clinical aspects of Down syndrome from infancy to adulthood.
    Am J Med Genet Suppl. 1990;7:52-6. Review.
    Department of Pediatrics, Rhode Island Hospital, Providence 02915.
    Free full article in:
    http://www.dsmig.org.uk/library/articles/infancy-to-adulthood.html
     
  14. Associazione Catalana per la sindrome Down. “programa de salut”
    scarica il pdf (free) “programa de salut”
     
  15. Massei F, Gori L.
    L’inizio di una esperienza con il bambino affetto da sindrome di Down. In: a cura di S. Bargagna, F. Massei Un Progetto Integrato per la sindrome di Down. Aspetti clinici, riabilitativi e psicosociali.
    Edizioni del Cerro. Seconda edizione aggiornata, 2003.
    Capitolo in italiano disponibile on line in versione integrale
     
  16. Cos’altro on line?

    Down syndrome medical interest group (UK)
    http://www.dsmig.org.uk/publications/guidelines.html

    Down syndrome medical interest group (USA)
    http://www.denison.edu/collaborations/dsq/
    http://www.denison.edu/collaborations/dsq/recordsheet.html
    http://www.ds-health.com/recordsheet1.htm
    http://www.ds-health.com/recordsheet2.htm

    Dott. Leshin
    http://www.ds-health.com/
    http://www.ds-health.com/recordsheet1.htm
    http://www.ds-health.com/recordsheet2.htm

    Medical Series Altonweb
    http://www.altonweb.com/cs/downsyndrome/index.htm

    Vision problems
    http://www.cardiff.ac.uk/optom/DownsSyndromeGroup/Home.html

    Heart
    http://www.downs-heart.downsnet.org/

    Dental
    http://www.altonweb.com/cs/downsyndrome/index.htm?page=pilcher.html
    http://www.thejcdp.com/issue008/ce44ej/index_nlm.htm

    Menstrual management
    http://www.nas.com/downsyn/Staff.html

    Clinical Trial in doppio cieco sulla utilità di terapie antiossidanti orali. E’ in corso: on line.
    Antioxidants and Folinic Research Project
    (March 24th 2004) --- 156 babies are now enrolled in this project
    Recruiting was closed at the end of February 2004
    http://www.dsrf.co.uk/

    Nutrivene
    https://www.conosciamocimeglio.it/Down/docs/2002/gennaio/nutrivene.html

    Allattamento al seno
    http://www.lalecheleague.org/FAQ/down.html
    http://www.breastfeeding.asn.au/bfinfo/down.html
    https://www.conosciamocimeglio.it/Down/docs/2002/settembre/allattamento_al_seno.html

    The European Down Syndrome Association (EDSA)
    http://www.edsa.down-syndrome.org/periodicals/dsrp/

    Down Syndrome International ( DSI)
    http://www.down-syndrome-int.org/
    8th World Congress on Down Syndrome:
    Down Syndrome - Global Progress in a Changing Era

    Singapore, 14-18 April 2004
    http://www.down-syndrome-int.org/congress/current/
    Part 1: Medical and Scientific Programme
    http://www.down-syndrome-int.org/congress/current/8WDSC-PART1-130204.pdf
     

 

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