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Items: 1 to 20 of 120

1.

Parents' decisions to screen newborns for FMR1 gene expansions in a pilot research project.

Skinner D, Choudhury S, Sideris J, Guarda S, Buansi A, Roche M, Powell C, Bailey DB Jr.

Pediatrics. 2011 Jun;127(6):e1455-63. doi: 10.1542/peds.2010-3078. Epub 2011 May 29.

2.

Obtaining consent from both parents for pediatric research: what does "reasonably available" mean?

Nelson DK, Skinner D, Guarda S, Choudhury S, Sideris J, Barnum L, Ten Haagen K, Heyward Q, Bailey DB Jr.

Pediatrics. 2013 Jan;131(1):e223-9. doi: 10.1542/peds.2012-1278. Epub 2012 Dec 24.

3.

[A large-scale diagnostic program for the fragile X-syndrome among the mentally retarded. II. Implications for parents and family].

de Vries LB, Duivenvoorden HJ, Tibben A, Niermeijer MF.

Ned Tijdschr Geneeskd. 1998 Jul 18;142(29):1672-5. Dutch.

PMID:
9890807
4.

Attitudes about the use of newborn dried blood spots for research: a survey of underrepresented parents.

Hendrix KS, Meslin EM, Carroll AE, Downs SM.

Acad Pediatr. 2013 Sep-Oct;13(5):451-7. doi: 10.1016/j.acap.2013.04.010.

5.

Screening and diagnosis for the fragile X syndrome among the mentally retarded: an epidemiological and psychological survey. Collaborative Fragile X Study Group.

de Vries BB, van den Ouweland AM, Mohkamsing S, Duivenvoorden HJ, Mol E, Gelsema K, van Rijn M, Halley DJ, Sandkuijl LA, Oostra BA, Tibben A, Niermeijer MF.

Am J Hum Genet. 1997 Sep;61(3):660-7.

6.

Assessment of parental decision-making in neonatal cardiac research: a pilot study.

Nathan AT, Hoehn KS, Ittenbach RF, Gaynor JW, Nicolson S, Wernovsky G, Nelson RM.

J Med Ethics. 2010 Feb;36(2):106-10. doi: 10.1136/jme.2009.030676.

PMID:
20133406
7.

Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues.

Bailey DB Jr, Skinner D, Davis AM, Whitmarsh I, Powell C.

Pediatrics. 2008 Mar;121(3):e693-704. doi: 10.1542/peds.2007-0820. Review.

PMID:
18310190
8.

Parents' decision-making in newborn screening: opinions, choices, and information needs.

Lipstein EA, Nabi E, Perrin JM, Luff D, Browning MF, Kuhlthau KA.

Pediatrics. 2010 Oct;126(4):696-704. doi: 10.1542/peds.2010-0217. Epub 2010 Sep 13.

PMID:
20837593
9.

What factors are important to parents making decisions about neonatal research?

Hoehn KS, Wernovsky G, Rychik J, Gaynor JW, Spray TL, Feudtner C, Nelson RM.

Arch Dis Child Fetal Neonatal Ed. 2005 May;90(3):F267-9.

10.

Maternal attitudes to newborn screening for fragile X syndrome.

Christie L, Wotton T, Bennetts B, Wiley V, Wilcken B, Rogers C, Boyle J, Turner C, Hansen J, Hunter M, Goel H, Field M.

Am J Med Genet A. 2013 Feb;161A(2):301-11. doi: 10.1002/ajmg.a.35752. Epub 2013 Jan 9.

PMID:
23303663
11.

Screening for Fragile X Syndrome: parent attitudes and perspectives.

Skinner D, Sparkman KL, Bailey DB Jr.

Genet Med. 2003 Sep-Oct;5(5):378-84.

PMID:
14501833
12.

Factors that influence parental decisions to participate in clinical research: consenters vs nonconsenters.

Hoberman A, Shaikh N, Bhatnagar S, Haralam MA, Kearney DH, Colborn DK, Kienholz ML, Wang L, Bunker CH, Keren R, Carpenter MA, Greenfield SP, Pohl HG, Mathews R, Moxey-Mims M, Chesney RW.

JAMA Pediatr. 2013 Jun;167(6):561-6. doi: 10.1001/jamapediatrics.2013.1050.

13.

Newborn screening and cascade testing for FMR1 mutations.

Sorensen PL, Gane LW, Yarborough M, Hagerman RJ, Tassone F.

Am J Med Genet A. 2013 Jan;161A(1):59-69. doi: 10.1002/ajmg.a.35680. Epub 2012 Dec 13.

14.

Why Do Parents Grant or Deny Consent for Adolescent Participation in Sexuality Research?

Moilanen KL.

J Youth Adolesc. 2016 May;45(5):1020-36. doi: 10.1007/s10964-016-0445-y. Epub 2016 Feb 24.

PMID:
26910523
15.

Fragile X syndrome detection in newborns-pilot study.

Saul RA, Friez M, Eaves K, Stapleton GA, Collins JS, Schwartz CE, Stevenson RE.

Genet Med. 2008 Oct;10(10):714-9. doi: 10.1097/GIM.0b013e3181862a76.

PMID:
18813135
16.

Informed consent process in Alpha-1 testing of at-risk children: views of parents and adults tested as children.

Coors ME, Moseley R, McGorray S.

COPD. 2011 Feb;8(1):30-8. doi: 10.3109/15412555.2010.541958.

PMID:
21299476
17.

Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?

Bailey DB Jr, Bann C, Bishop E, Guarda S, Barnum L, Roche M.

Genet Med. 2013 Apr;15(4):299-306. doi: 10.1038/gim.2012.135. Epub 2012 Oct 25.

PMID:
23100013
18.

Parents' experiences of newborn screening for genetic susceptibility to type 1 diabetes.

Kerruish NJ.

J Med Ethics. 2011 Jun;37(6):348-53. doi: 10.1136/jme.2010.039206. Epub 2011 Jan 25.

PMID:
21266388
19.

Attitudes of new mothers towards genetics and newborn screening.

Quinlivan JA, Suriadi C.

J Psychosom Obstet Gynaecol. 2006 Mar;27(1):67-72.

PMID:
16752878
20.

Parents' perceptions of randomization in pediatric clinical trials. Children Cancer Group.

Wiley FM, Ruccione K, Moore IM, McGuire-Cullen P, Fergusson J, Waskerwitz MJ, Perin G, Ge J, Sather HN.

Cancer Pract. 1999 Sep-Oct;7(5):248-56.

PMID:
10687594

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