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ADC Fetal and Neonatal Edition Letters and ADC Education and Practice Letters
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Newborn screening for Duchenne Muscular Dystrophy
- EP Parsons, DM Bradley, AJ Clarke (6 August 2002)
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EP Parsons, Dr Institute of Medical Genetics, DM Bradley, AJ Clarke
Send letter to journal:
parsonsep{at}cf.ac.uk EP Parsons, et al.
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Dear Editor
Elliman, Dezateux and Bedford,[1] in their recent leading article on newborn and childhood screening, include reference to newborn screening for Duchenne muscular dystrophy (DMD). They argue that the main value of such a screening programme is to warn parents that future sons may be affected, and support this statement with reference to Jarvinen et al.[2] This paper does not report a newborn screening study but the results of a retrospective study of 23 females in Finland carrier tested for DMD during childhood. We would like to use this letter to up-date your readership. A newborn screening programme for DMD has been running in Wales since 1990 (1990- 1998 as a research evaluation and 1998 to date health authority funded). During the research period interim evidence was published.[3-6] More recently the full results of our prospective study have been published.[7] Our evaluation has demonstrated that a newborn screening programme for DMD can be acceptable to both parents and health professionals providing that a rigorous service delivery protocol is in place and the programme is supported by an effective infrastructure, in particular, by paediatric and genetic services. References (1) Elliman DAC, Dezateux C, Bedford HE. Newborn and childhood screening programmes: criteria, evidence and current policy. Arch Dis Child 2002; 87: 6-9. (2) Jarvinen O, Lehesjoki AE, Lindlof M et al. Carrier testing of children for two X-linked diseases: a retrospective study of comprehension of the test results and social and psychological significance of the testing. Paediatrics 2000; 106:1460-1465. (3) Bradley DM, Parsons EP, Clarke AJ. Experience with screening newborns for Duchenne muscular dystrophy in Wales. BMJ 1993; 306: 357-360. (4) Fenton-May J, Bradley DM, Sibert J, Smith RA, Parsons EP, Clarke AJ. Screening for Duchenne muscular dystrophy. Arch Dis Child 1994; 70: 551- 552. (5) Parsons EP, Bradley DM, Clarke AJ. Disclosure of Duchenne muscular dystrophy after newborn screening. Arch Dis Child 1996; 74: 550-553. (6) Bradley DM, Parsons EP. Neonatal screening for Duchenne muscular dystrophy. Semin Neonatol 1998; 3: 27-34. (7) Parsons EP, Clarke AJ, Bradley DM. Newborn screening for Duchenne muscular dystrophy: a psychosocial study. Arch Dis Child 2002; 86: F91- F95. |
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