Down-Syndrom-Kritische Bewertung von Informationen aus dem InternetAxel Zahn 345I789101112131415II16.117181920.2212223242526272829.330.4313233III.13435363738601#55339603#65540414243.244473#249.34546610#7794748597#77949.450515253960#4935455586#87656589#88657581#29558580#402596061626364458#8256566676869707172737475767778798081828384.585594#77286878889585#76490.69192432#262939495596#70996598#725979899585#245100101604#766.7102326#271103326#259104105592#711106601#730107108605#692109605#692110524#519111536#498112521#523113538#507.8114115602#780116117614#778.9118119IV120121122123124125126127128129130131132133134135136137138139140141142143144145146147148V149150151152153 Abkürzungsverzeichnis6Literaturverzeichnis154155156157158159160161 Danksagung162163 Eidesstattliche Erklärung164deInhaltsverzeichnisHilfe Literaturverzeichnis Ambre J, Guard R, Perveiler FM, Renner J, Rippen H. White paper: Criteria for assessing the quality of health information on the internet. 1997; URL: http://www.mitretek.org/hiti/showcase/documents/criteria.html. Amercian Academy of Pediatrics Commitee on Genetics. Health Supervision for Children with Down syndrome. Pediatrics 1994; 93:855-9. Arzneimittelkommission der deutschen Ärzteschaft. Vorläufiges Verbot für Zelltherapeutika. Deutsches Ärzteblatt 1987; 84 B-1538. Avet-Loiseau H, Mechinaud F, Harousseau JL. Clonal Hematologic Disorders in Down syndrome. J Pediatr Hematol Oncol 1995; 17: 19-24. Baird P, Sadovnick AD. Life tables for Down syndrome. Hum Genet 1989; 82: 291-2. Behrman RE, Kliegman RM, Arvin AM. Nelson Textbook of Pediatrics. 16th edition. WB Saunders, 2000. Bennett FC, McClelland S, Kriegsmann EA, Andrus LB, Sells CJ. Vitamin and mineral supplementation in Down´s Syndrome. Pedriatrics 1983; 72: 707-13. Bidder RT, Gray P, Newcombe RG, Evans BK, Hughes M. The effects of multivitamins and minerals on children with Down syndrome. Dev Med Child Neurol 1989; 31: 532-37. Biermann JS, Golladay GJ, Greenfield ML, Baker LH. Evaluation of cancer information on the internet. Cancer 1999; 86: 381-90. Björksten B, Bäck O, Gustavson KH, Hallmans G, Hagglof B, Tarnvik A. Zinc and immune function in Down´s syndrome. Acta Paediatr Scand 1980; 69: 183-7. Boyer C, Selby M, Scherrer JR, Appel RD. The Health On the Net Code of Conduct for medical and health Websites. Comput Biol Med 1998; 28: 603-10. British Healthcare Internet Association (BHIA). Quality standards for medical publishing on the web. 1996 ; URL: http://www.bhia.org/public/reference/recommendations/medpubstandards.htm. Chadwick DW, Crook PJ, Young AJ, McDowell DM, Dornan TL, New JP. Using the internet to access confidential patient records: a case study. BMJ 2000; 321: 612-4. Chango A, Fillon-Emery N, Lambert D, Nicolas J. Sources d´information sur internet: exemple de recherche sur le syndrome de Down (trisomie 21). Ann Biol Clin 2000; 58: 512-5. Charnock D, Shepherd S, Nedham G, Gann R. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health 1999; 53: 105-11. Coiera E: Editorial: Information epidemics, economics and immunity on the internet. BMJ 1998; 317: 1469-70. Coulter A, Entwistle V, Gilbert D: Sharing decisions with patients: is the information good enough? BMJ 1999a; 318: 318-22. Coulter A. Paternalism or partnership? Patients have grown up-and there´s no going back. BMJ 1999b; 319: 719-20. Coulter A. Editorial: Evidence based patient information. is important, so there needs to be a national strategy to ensure it. BMJ 1998; 317: 225-6. Culver JD, Gerr F, Frumkin H. Medical information on the internet - a study of an electronic bulletin board. J Gen Intern Med 1997; 12: 466-470. Delamothe T. Quality of websites: kitemarking the west wind. BMJ 2000; 321: 843-4. Dmitriev V. Frühförderung für mongoloide Kinder. Das Down-Syndrom.

Weinheim-Basel:

Beltz-Verlag; 1987. e-Health Ethics Initiative. e-Health Ethics Draft Code. J Med Internet Res 2000; 2(1): e2. URL: http://www.jmir.org/2000/1/e2/. Eysenbach G, Yihune G, Lampe K, Cross P, Brickley D. Quality Management, Certification and Rating of Health Information on the Net with MedCERTAIN: Using a medPICS/RDF/XML metadata structure for implementing eHealth ethics and creating trust globally. J Med Internet Res 2000 ; Vol. 2 Iss. 1 Suppl. 2 - Proceedings of Med CERTAIN Workshop, URL: http://www.jmir.org/2000/3/suppl2/e1/index. Eysenbach G, Diepgen TL. Patients looking for information on the Internet and seeking teleadvice: motivation, expectations and misconceptions as expressed in e-mails sent to physicians. Arch Dermatol 1999a; 135: 151-6. Eysenbach G, Diepgen TL. Labeling and filtering of medical information on the Internet. Methods Inf Med 1999b; 38: 80-8. Eysenbach G, Diepgen TL. Shopping around the internet today and tomorrow: towards the millenium of cybermedicine. BMJ 1999c; 319: 1294-8. Eysenbach G, Diepgen TL. Towards quality management of medical information on the internet: evaluation, labelling and filtering of information. BMJ 1998; 317: 1496-502. Fong C, Brodeur GM. Down´s Syndrome and leukemia: epidemiology, genetics, cytogenetics and mechanisms of leukemogenesis. Cancer Genet Cytogenet 1987; 28: 55-76. Franceschi C, Chiricolo M, Licastro F, Zannotti M, Masi M, Mocchegiani E, Fabris N. Oral zinc supplementation in Down´s syndrome: restauration of thymic endocrine activity and some immune defects. J Ment Defic Res 1988; 32: 169-81. Gardiner PV. Evidence based patient information. Doctors should be encouraged to develop information resources on the internet [letter; comment]. BMJ 1999; 318: 461. Garwick AW, Patterson J, Bennett FC, Blum RW. Breaking the News. How families first learn about their child´s chronic condition. Arch Pediatr Adolesc Med 1995; 149: 991-7. Gilmore DW, Oates RK. Counseling about Down´s Syndrome: The parents´ viewpoint. Med J Aust 1977; 2: 600-3. Graber MA, Roller CM, Kaeble B. Readability levels of patient educational material on the World Wide Web. J Fam Pract 1999; 48: 58-61. Graphics, Visualization & Usability Center (GVU). GVU 10th WWW user survey of October 1998. URL : http://www.cc.gatech.edu/gvu/user_surveys/survey-1998-10/graphs/use/q109.htm. Harrel RF. Can nutritional supplements help mentally retarded children? An exploratory study. Proceedings of the National Academy of Sciences USA. 1981; 78: 574-8. Haubold H, Wunderlich C, Loew W. Grundzüge der therapeutischen Beeinflußbarkeit von entwicklungsgehemmten mongoloiden Kindern im Sinne einer "Nachreifungsbehandlung". Med Klin 1963; 24: 991. Heggarty HJ, Ball R, Smith M, Henderson MJ. Amino acid profile in Down´s syndrome. Arch Dis Child 1996; 74: 347-9. Hellawell GO, Turner KJ, Le Monnier KJ, Brewster SF. Urology and the Internet: an evaluation of Internet use by urology patients and of information available on urological topics. BJU Int 2000; 86: 191-4. Helwig AL, Lovelle A, Guse CE, Gottlieb MS. An office-based Internet patient education system: a pilot study. J Fam Pract 1999; 48: 123-7. Hernández-Borges AA, Macías-Cervi P, Gaspar-Guardado MA, Torres-Alvarez de Arcaya ML, Ruiz-Rabaza A, Ormazábal-Ramos C. Assessing the relative quality of Anesthesiology and critical care medicine internet mailing lists. Anesth Analg 1999a; 89: 520-5. Hernández-Borges AA, Macías-Cervi P, Gaspar-Guardo MA, Torres-Álvarez de Arcaya ML, Ruiz-Rabaza A, Jiménez-Sosa A: Can examination of WWW usage statistics and other indirect quality indicators help to distinguish the relative quality of medical websites?. J Med Internet Res 1999b;1(1):e1. URL: http://www.jmir.org/1999/1/e1/. Holland AJ, Hon J, Huppert FA, Stevens F, Watson P. Population-based study of the prevalence and presentation of dementia in adults with Down syndrome. Br J Psychiatry 1998; 172: 493-8. HON Health On the Net Foundation. 5th HON Survey on the Evolution of Internet Use for Health Purposes October - November 1999. URL: http://www.hon.ch/surveys/analysis.html. Impicciatore P, Pandolfini C, Casella N, Bonati M. Reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home. BMJ 1997; 314: 1875-9. Jadad AR. Promoting partnerships: Challenges for the internet age. BMJ 1999; 319: 761-4. Jadad AR, Gagliardi A. Rating Health Information on the Internet: navigating to knowledge or to Babel?. JAMA 1998; 279: 611-4. Jiang YL. Quality evaluation of orthodontic information on the World Wide Web. Am J Orthod Dentofacial Orthop 2000; 118: 4-9. Källén B, Mastroiacovo P, Robert E. Major Congenital Malformations in Down syndrome. Am J Med Genet 1996; 65: 160-6. Karlsson B, Gustafsson J, Hedov G, Ivarsson SA, Annerén G. Thyroid dysfunction in Down´s Syndrome: relation to age and autoimmunity. Arch Dis Child 1998; 79: 242-5. Kassirer JP. The next transformation in the delivery of health care. N Engl J Med 1995; 332: 52-4. Keller, Wiskott. Lehrbuch der Kinderkrankheiten. 6. Auflage.

Stuttgart

: Thieme-Verlag; 1991. p.109-13. Kim P, Eng TR, Deering MJ, Maxfield A. Published criteria for evaluating health related web sites: review. BMJ 1999; 318: 647-9. LaPorte RE, Marler E, Akazawa S, Sauer F, Gamboa C, Shenton C, Glosser C, Villasenor A, Maclure M. The death of the biomedical journals. BMJ 1995; 310: 1387-90. Lawrence S, Giles CL. Searching the World Wide Web. Science 1998; 280: 98-100. Lejeune J. On the pathogeny of mental deficiency in trisomy 21.

Rom,

International Symposium on Trisomy 21, 21.-24- Mai 1989. Lejeune J, Rethore MO, de Bois MC, Peeters M, Naffah J, Megarbane A, Cattaneo F, Mircher C, Rabier D, Parvy P. Acides amines et trisomie 21. Ann Genet 1992; 35: 8-13. Lockitch G, Puterman M, Godolphin W, Sheps S, Tingle AJ, Quigley G. Infection and immunity in Down syndrome: A trial of long term low oral doses of zinc. J Pediatr 1989; 114: 781-7. Lorenz B. Augenveränderungen bei Morbus Down. In: Murken J, Dietrich-Reichart E. Down-Syndrom - aktuelle Bezeichnung für Mongolismus.

Starnberg-Percha:

R. S. Schulz; 1990. Matin MA, Sylvester PE, Edwards D, Dickerson JW. Vitamin and zinc status in Down syndrome. J Ment Defic Res 1981; 25: 121-6. McClung HJ, Murray RD, Heitlinger LA. The Internet as a Source for Current Patient Information. Pediatrics 1998; 101. URL: http://www.pediatrics.org/cgi/content/full/101/6/e2. McKinley J, Cattermole H, Oliver CW. The quality of surgical information on the internet. J R Coll Surg 1999; 44: 265-8. McLeod SD. The Quality of Medical Information on the Internet. Arch Ophthalmol 1998; 116: 1663-5. Murken J, Dietrich-Reichardt E. (eds.): Down-Syndrom - aktuelle Bezeichnung für Mongolismus.

Starnberg-Percha:

R. S. Schulz; 1990. Pruess JB, Fewell RR, Bennett FC. Vitamin therapy and children with Down syndrome: A review of research. Except Child 1989; 55: 336-41. Pueschel SM, Annerén G, Durlach R, Flores J, Sustrova M, Verma IC: Guidelines for optimal medical care of persons with Down syndrome. International League of Societies for Persons with Mental handicap (ILSMH). Acta Paediatr 1995; 84: 823-7. Reents S, Miller TE. Cyber Dialogue: The health care industrie in transition-the online mandate to change. Band Cyber Dialogue 1998 ; URL: http://www.cyberdialogue.com/free_data/white papers/intel_health_day.html. Rett A. Mongolismus. Biologische, erzieherische und soziale Aspekte.

Bern:

Huber; 1983. Roizen NJ, Mets M, Blondis TA. Ophthalmic Disorders in Children with Down syndrome. Dev Med Child Neurol 1994; 36: 594-600. Rudolph´s Pediatrics. Trisomy 21. Prentice and Hall Int. Inc.; 1996. p. 297-9. Sacchetti P, Zvara P, Plante MK. The internet and patient education-resources and their reliability: focus on a select urologic topic. Urology 1999; 53: 1117-20. Sandvik H. Health information and interaction on the internet: a survey of female urinary incontinence. BMJ 1999; 319: 29-32. Schulte, Spranger (eds.): Lehrbuch der Kinderkrankheiten. 27. Auflage. Stuttgart: Gustav-Fischer-Verlag; 1993. p. 147. Shepperd S, Charnock D, Gann B. Helping patients access high quality health information. BMJ 1999; 319: 764-6. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling and assuring the quality of medical information on the internet. JAMA 1997; 277: 1244-5. Sinet PM, Neve J, Nicole A, Molle L. Low plasma selenium in Down´s syndrome (Trisomy 21). Acta Paediatr Scand 1984; 73: 275-7. Smith GF, Spiker D, Peterson CP, Cicchetti D, Justine P. Use of megadoses of vitamins with minerals in Down syndrome. J Pediatr 1984; 105: 228-34. Sonnenberg FA. Health information on the internet. Opportunities and pitfalls. Arch Intern Med 1997; 157: 151-2. Soot LC, Moneta GL, Edwards JM. Vascular surgery and the internet. A poor source of patient-oriented information. J Vasc Surg 1999; 30: 84-91. Specker C, Richter J, Take A, Sangha O, Schneider M. RheumaNet-a novel Internet-based rheumatology information network in Germany. Br J Rheumatol 1998; 37: 1015-9. Storm W: Das Down-Syndrom.

Stuttgart:

Wissenschaftliche Verlagsgesellschaft mbH; 1995. Sullivan D: How search engines work. Searchenginewatch 2000; URL: http://searchenginewatch.com. Tench CM, Clunie GP, Dacre J, Peacock A. An insight into rheumatology resources available on the World Wide Web. Br J Rheumatol 1998; 37: 1233-5. Terry NP. Rating the "raters": legal exposure of trustmark authorities in the context of consumer health informatics. J Med Internet Res 2000; URL: http://www.jmir.org/2000/3/e18. Turkel H. Medical amelioration of Down´s syndrome incorporating the orthomolecular approach. Journal of Orthomolecular Psychiatry 1975; 4 102-15. Van Allen MI, Fung J, Jurenka SB. Health care concerns and guidelines for adults with Down syndrome. Am J Med Genet 1999; 89: 100-10. Van Dyke DC, Lang DJ, van Duyne S, Heide F, Chang HJ. Cell therapy in children with Down syndrome: a retrospective study. Pediatrics 1990; 85: 79-84. Weathers C. Effects of nutritional supplementation on IQ and certain other variables associated with Down syndrome. Am J Ment Defic 1983; 88: 214-7. Weisbord SD, Soule JB, Kimmel PL. Poison on line-acute renal failure caused by oil of wormwood purchased through the Internet. N Engl J Med 1997; 337: 825-7. Whatling P. Having non-medical readers of papers on internet will enhance peer review. BMJ 1999; 318 : 1144-5. Widman LE, Tong DA. Requests for medical advice form patients and families to health care providers who publish on the World Wide Web. Arch Intern Med 1997; 157: 209-12. Wiedemann HR, Kunze J. Atlas der Klinischen Syndrome. Für Klinik und Praxis. 4. Auflage.

Stuttgart:

Schattauer-Verlag; 1995. Wilson SM. Impact of the Internet on Primary Health Care Staff in Glasgow. J Med Internet Res 1999; URL : http://www.jmir.org/1999/2/e7. Winker MA, Flanagin A, Chin-Lum B, White J, Andrews K, Kennett RL, De Angelis CD, Musacchio RA. Guidelines for medical and health information sites on the Internet: principles governing AMA Web sites. JAMA 2000; 283: 1600-6. Wyatt JC. Commentary: Measuring quality and impact of the world wide web. BMJ 1997; 314: 1879-81. Zipursky A, Poon A, Doyle J. Leukemia in Down syndrome: a review. Pediatr Hematol Oncol 1992; 9: 139-49. Zorzi G, Thurman SK, Kistenmacher ML. Importance and adequacy of genetic counseling information: Impressions of parents with Down´s syndrome children. Ment Retard 1980; 18: 255-7.