Experience in prenatal testing for Huntington's disease in the Netherlands: Procedures, results and guidelines (1987-1997)

Prenatal Diagnosis

Volumn 19, Issue 5, 1999, Pages 450-457

  Maat Kievit, Anneke ^a   Vegter Van Der Vlis, Maria ^a   Zoeteweij, Moniek ^a   Losekoot, Monique ^a   Van Haeringen, Arie ^a   Kanhai, Humphrey ^a   Roos, Raymund ^a  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Huntington's disease; Prenatal testing

Indexed keywords

ADULT; ARTICLE; CLINICAL PROTOCOL; FEMALE; FETUS; HUMAN; HUNTINGTON CHOREA; MAJOR CLINICAL STUDY; MALE; NETHERLANDS; PARENTAL BEHAVIOR; PATIENT COUNSELING; PRACTICE GUIDELINE; PREGNANCY TERMINATION; PRENATAL DIAGNOSIS; PRIORITY JOURNAL;

ADULT; FEMALE; FETAL DISEASES; GENETIC COUNSELING; GUIDELINES; HUMANS; HUNTINGTON DISEASE; MALE; NETHERLANDS; PREDICTIVE VALUE OF TESTS; PREGNANCY; PRENATAL DIAGNOSIS;

EID: 0032903253     PISSN: 01973851     EISSN: None     Source Type: Journal    
DOI: 10.1002/(SICI)1097-0223(199905)19:5<450::AID-PD568>3.0.CO;2-L     Document Type: Article

References (39)

1. Adam S, Wiggins S, Whyte P, Bloch M, Shokeir MHK, Soltan H, Meschino W, Summers A, Suchowersky O, Welch JP, Huggins M, Theilmann J, Hayden MR. 1993. Five year study of prenatal testing for Huntington disease: demand, attitudes and psychological assessment. J Med Genet 30: 549-556.
2. Benitez J, Robledo M, Ramos C, Ayuso C, Astarloa R, Garcia Yebenes J, Brambati B. 1995. Somatic stability in chorionic villi samples and other Huntington fetal tissues. Hum Genet 96: 229-232.
3. Benjamin CM, Adam S, Wiggins S, Theilmann JL, Copley TT, Bloch M, Squitieri F, McKellin W, Cox S, Brown SA, Kremer HPH, Burgess M, Meshino W, Summers A, Macgregor D, Buchanan J, Greenberg C, Carson N, Ives E, Frecker M, Welch JP, Fuller A, Rosenblatt D, Miller S, Dufrasne S, Roy M, Andermann E, Prevost C, Khalifa M, Girard K, Taylor S, Hunter A, Goldsmith C, Whelan D, Eisenberg D, Soltan H, Kane J, Shokeir MHK, Gibson A, Cardwell S, Bamforth S, Grover S, Suchowesky O, Klimek M, Garber HA, Macleod P, Hayden MR. 1994. Proceed with care: direct testing for Huntington Disease. Am J Hum Genet 55: 606-617.
4. Bloch M, Fahy M, Fox S, Hayden MR. 1989. Predictive testing for Huntington's disease II: demographic characteristics, life style patterns, attitudes and psychosocial assessment of the first fifty-one test candidates. Am J Med Genet 32: 217-224.
5. Brandt J, Quaid KA, Folstein SE, Garber P, Maestri NE, Abbott MH. 1989. Presymptomatic diagnosis of delayed-onset disease with linked DNA markers. The experience in Huntington's disease. JAMA 261: 3108-3114.
6. Brock DJH, Curtis A, Barren L, Dinwoodie D, Crosbie A, Mennie M, Millan FA, Raeburn JA, Holloway S, Wright A, Pullen I. 1989. Predictive testing for Huntington's disease with linked DNA markers. Lancet 463-466.
7. Chong SS, Almqvist E, Telenius H, LaTray L, Nichol K, Bourdelat-Parks B, Goldberg YP, Haddad BR, Richards F, Sillence D, Greenberg CR, Ives E, Van den Engh G, Hughes MR, Hayden MR. 1997. Contribution of DNA sequence and CAG size to mutation frequencies of intermediate alleles for Huntington disease: evidence from single sperm analyses. Hum Mol Genet 6: 301-309.
8. Craufurd D, Kerzin-Storror L, Dodge A, Harris R. 1989. Uptake of presymptomatic predictive testing for Huntington's disease. Lancet 2: 603-605.
9. Evers-Kiebooms G, Swerts A, Cassiman JJ, van den Berge H. 1989. The motivation of at-risk individuals and their partners in deciding for or against predictive testing for Huntington's disease. Clin Genet 35: 29-40.
10. Fahy M, Robbins C, Bloch M, Turnell RW, Hayden MR. 1989. Different options for prenatal testing for Huntington's disease using DNA probes. J Med Genet 26: 353-357.
11. Frets PG, Duivenvoorden HJ, Verhage F, Niermeyer MF, vd Berge SMM, Galjaard H. 1990. Factors influencing the reproductive decisions after genetic counselling. Am J Med Genet 35: 496-502.
12. Goldberg YP, McMurray CT, Zeisler J, Almqvist E, Sillence D, Richards F, Marquis Gacy A, Buchanan J, Telenius H, Hauden MR. 1995. Increased instability of intermediate alleles in families with sporadic Huntington disease compared to similar sized intermediate alleles in the general population. Hum Mol Genet 4: 1911-1918.
13. Gusella JF, Wexler NS, Conneally PM, Naylor SL, Anderson MA, Tanzi RE, Watkins PC. 1983. A polymorphic DNA marker genetically linked to Huntington's disease. Nature 306: 234-238.
14. Harper PS. 1996. Huntington's Disease. London: Saunders.
15. Hayden MR, Kastelein JJP, Wilson RD, Hubert C, Hewitt J, Langlois S, Fox S, Bloch M. 1987. First trimester prenatal diagnosis for Huntington's disease with DNA probes. Lancet 1: 1284-1285.
16. Huntington's Disease Collaborative Research Group 1993. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell 72: 971-983.
17. International Huntington Association and World Federation of Neurology Research Group on Huntington's Chorea 1990. Ethical issues policy statement on Huntington's disease molecular genetics predictive test. J Med Genet 27: 34-38.
18. International Huntington Association and World Federation of Neurology Research Group on Huntington's Chorea 1994. Guidelines for the molecular genetics predictive test in Huntington's disease. J Med Genet 31: 555-559.
19. Kessler S. 1993. Forgotten person in the Huntington disease family. Am J Med Genet 48: 145-150.
20. Kessler S, Field T, Worth L, Mosbarger H. 1987. Attitudes of persons at risk for Huntington's disease toward predictive testing. Am J Med Genet 26: 259-270.
21. Leeflang EP, Zhang L, Tavare S, Hubert R, Srinidhi J, MacDonald ME, Myers RH, de Young M, Wexler N, Gusella JF, Arnheim N. 1995. Single sperm analysis of the trinucleotide repeats in the Huntington's disease gene: quantification of the mutation frequency spectrum. Hum Mol Genet 4: 1519-1526.
22. Markel DS, Young AB, Penney JB. 1990. At-risk person's attitudes toward presymptomatic and prenatal testing of Huntington's disease in Michigan. Am J Med Genet 26: 295-395.
23. Mastromauro C, Myers RH, Berkman B. 1987. Attitudes toward presymptomatic testing in Huntington's disease. Am J Med Genet 26: 271-282.
24. Meissen GJ, Berchek RL. 1987. Intended use of predictive testing by those at risk for Huntington's disease. Am J Med Genet 26: 283-293.
25. Meissen GJ, Myers RH, Mastromauro CA, Koroshetz WJ, Klinger KW, Farrer LA, Watkins PA, Gusella JF, Bird ED, Martin JB. 1988. Predictive testing for Huntington's disease with the use of a linked DNA marker. N Engl J Med 318: 535-542.
26. Morris MJ, Tyler A, Lazarou L, Meredith L, Harper PS. 1989. Problems in genetic prediction for Huntington's disease. Lancet 2: 601-603.
27. Post SG. 1992. Huntington's disease: prenatal screening for late onset disease. J Med Ethics 18: 757-758.
28. Quaid KA, Morris M. 1993. Reluctance to undergo predictive testing by those at risk for Huntington's disease. Am J Med Genet 45: 41-45.
29. Quarrell OWJ, Tyler A, Upadhyaya M, Meredith AL, Youngman S, Harper PS. 1987. Exclusion testing for Huntington's disease in pregnancy with a closely linked DNA marker. Lancet 1: 1281-1283.
30. Roos RAC, Hermans J, Vegter-vd Vlis M, van Ommen GJB, Bruyn GW. 1993. Duration of illness in Huntington's disease is not related to age at onset. J Neurol Neurosurg Psych 56: 98-100.
31. Schulman JD, Black SH, Handyside A, Nance WE. 1996. Preimplantation genetic testing for Huntington disease and certain other dominantly inherited disorders. Clin Genet 49: 57-58.
32. Skraastad MI, Verwest A, Bakker E, Vegter-vd Vlis M, v Leeuwen-Cornelisse I, Roos RAC, Pearson PL, v Ommen G. 1991. Presymptomatic, prenatal and exclusion testing for Huntington's disease using seven closely linked DNA markers. Am J Med Genet 3: 217-222.
33. Telenius H, Kremer B, Goldberg YP, Theilmann J, Andrew SE, Zeisler J, Adam S, Greenberg C, Ives EJ, Clarke LA, Hayden MR. 1994. Somatic and gonadal mosaicism of the Huntington disease gene CAG repeat in brain and sperm. Nature Genet 6: 409-413.
34. Tibben A, Frets PG, vd Kamp JJP, Niermeyer MF, Vegter-vd Vlis M, Roos RAC, v Ommen GJB, Duivenvoorden HJ, Verhage F. 1993a. Presymptomatic DNA testing for HD: pretest attitudes and expectations of applicants and their partners in the Dutch program. Am J Med Genet 48: 10-61.
35. Tibben A, Frets PG, vd Kamp JJP, Niermeijer MF, Vegter-vd Vlis M, Roos RAC, Rooymans GM, v Ommen GJB, Verhage F. 1993b. On attitudes and appreciation, 6 months after predictive DNA testing for Huntington disease in the Dutch program. Am J Med Genet 48: 103-111.
36. Tibben A, Vegter-vander Vlis M, Skraastad M, Frets PG, van de Kamp JJP, Niermeyer M, van Ommen G-JB, Roos RAC, Rooijmans HGM, Stronks D, Verhage F. 1992. DNA-testing for Huntington's disease in The Netherlands; a retrospective study on psychosocial effects. Am J Med Genet 44: 94-99.
37. Tyler A, Ball D, Craufurd D on behalf of the United Kingdom Huntington's Disease Prediction Consortium. 1992. Presymptomatic testing for Huntington's disease in the United Kingdom. Br Med J 304: 1593-1596.
38. Tyler A, Quarrell OWJ, Lazarou LP, Meredith AL, Harper PS. 1990. Exclusion testing in pregnancy for Huntington's disease. J Med Genet 27: 488-495.
39. Zoeteweij M, Geerinck-Vercammen CR, Maat-Kievit JA, Losekoot M, Kanhai HHH, van Haeringen A. 1997. Prenatal testing for Huntington's disease: first results of a psychological follow-up study in the Netherlands. Genet Counsel 8: 147-186.