Limits...
Positive screening and carrier results for the England-wide universal newborn sickle cell screening programme by ethnicity and area for 2005-07.

Streetly A, Latinovic R, Henthorn J - J. Clin. Pathol. (2010)

Bottom Line: Data are reported on screening results by ethnic group and geographical area.These results provide useful information both about the frequency of these conditions and the carrier state and their geographic and ethnic distribution across England.This can be used to refine counselling information and are also useful to target and plan services and public information.

View Article: PubMed Central - PubMed

Affiliation: NHS Sickle Cell and Thalassaemia Screening Programme, King's College London School of Medicine, Division of Health and Social Care Research, London, UK. allison.streetly@kcl.ac.uk

ABSTRACT

Aims: The overall aim of the new national newborn programme is to identify infants at risk of sickle cell disease to allow early detection and to minimise deaths and complications.

Methods: Universal screening for sickle cell disease was introduced in England between September 2003 and July 2006. The 13 newborn laboratories each screen between 25,000 and 110,000 babies a year using the existing dried bloodspot cards. The specified conditions to be screened for include sickle cell anaemia (Hb SS), Hb SC disease, Hb S/beta thalassaemia, Hb S/D(Punjab) and Hb S/O(Arab). Data are reported on screening results by ethnic group and geographical area.

Results: The prevalence of screen positive results across England is 1:2000. There is a 25-fold variation by geographical area. African babies make up 61% of all screen positive results despite representing only 4% of total births. Combined carrier rates vary widely by ethnicity, from 1.85 per 1000 (1:540) in 'White British' to 145 per 1000 (1:7) in 'African' babies. Refusal rates for screening show variation by ethnicity.

Conclusions: These results provide useful information both about the frequency of these conditions and the carrier state and their geographic and ethnic distribution across England. This can be used to refine counselling information and are also useful to target and plan services and public information.

Show MeSH

Related in: MedlinePlus

Refusal rates per 1000 babies screened: April 2005 to March 2007.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
getmorefigures.php?uid=PMC2990147&req=5

fig2: Refusal rates per 1000 babies screened: April 2005 to March 2007.

Mentions: Figure 2, showing refusal rates for screening, shows that several populations such as the ‘any other white background’ (1:940), ‘Black Caribbean’ (1:840) and ‘not stated’ (1:880) populations appear to have a significantly higher rate of refusal of screening than the ‘White British’ (1:3150) category with CIs not overlapping the ‘White British’ category. Overall about 300 refusals are documented each year, and for these cases a blank card is sent to the laboratory to ensure that this information is documented on all records so that a test may still be performed if clinical suspicion is raised or if the child subsequently becomes ill. Almost exclusively refusals are for screening for all five conditions and not specifically a refusal for sickle cell disease screening. To date, to our knowledge, none of these refusals have been babies already identified by antenatal screening as at high risk of being affected. For infants at a 1:4 or higher risk the clinical policy is to offer liquid blood sample testing in advance of the bloodspot screen which is still offered (see page 4 of the programme laboratory handbook).2


Positive screening and carrier results for the England-wide universal newborn sickle cell screening programme by ethnicity and area for 2005-07.

Streetly A, Latinovic R, Henthorn J - J. Clin. Pathol. (2010)

Refusal rates per 1000 babies screened: April 2005 to March 2007.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC2990147&req=5

fig2: Refusal rates per 1000 babies screened: April 2005 to March 2007.
Mentions: Figure 2, showing refusal rates for screening, shows that several populations such as the ‘any other white background’ (1:940), ‘Black Caribbean’ (1:840) and ‘not stated’ (1:880) populations appear to have a significantly higher rate of refusal of screening than the ‘White British’ (1:3150) category with CIs not overlapping the ‘White British’ category. Overall about 300 refusals are documented each year, and for these cases a blank card is sent to the laboratory to ensure that this information is documented on all records so that a test may still be performed if clinical suspicion is raised or if the child subsequently becomes ill. Almost exclusively refusals are for screening for all five conditions and not specifically a refusal for sickle cell disease screening. To date, to our knowledge, none of these refusals have been babies already identified by antenatal screening as at high risk of being affected. For infants at a 1:4 or higher risk the clinical policy is to offer liquid blood sample testing in advance of the bloodspot screen which is still offered (see page 4 of the programme laboratory handbook).2

Bottom Line: Data are reported on screening results by ethnic group and geographical area.These results provide useful information both about the frequency of these conditions and the carrier state and their geographic and ethnic distribution across England.This can be used to refine counselling information and are also useful to target and plan services and public information.

View Article: PubMed Central - PubMed

Affiliation: NHS Sickle Cell and Thalassaemia Screening Programme, King's College London School of Medicine, Division of Health and Social Care Research, London, UK. allison.streetly@kcl.ac.uk

ABSTRACT

Aims: The overall aim of the new national newborn programme is to identify infants at risk of sickle cell disease to allow early detection and to minimise deaths and complications.

Methods: Universal screening for sickle cell disease was introduced in England between September 2003 and July 2006. The 13 newborn laboratories each screen between 25,000 and 110,000 babies a year using the existing dried bloodspot cards. The specified conditions to be screened for include sickle cell anaemia (Hb SS), Hb SC disease, Hb S/beta thalassaemia, Hb S/D(Punjab) and Hb S/O(Arab). Data are reported on screening results by ethnic group and geographical area.

Results: The prevalence of screen positive results across England is 1:2000. There is a 25-fold variation by geographical area. African babies make up 61% of all screen positive results despite representing only 4% of total births. Combined carrier rates vary widely by ethnicity, from 1.85 per 1000 (1:540) in 'White British' to 145 per 1000 (1:7) in 'African' babies. Refusal rates for screening show variation by ethnicity.

Conclusions: These results provide useful information both about the frequency of these conditions and the carrier state and their geographic and ethnic distribution across England. This can be used to refine counselling information and are also useful to target and plan services and public information.

Show MeSH
Related in: MedlinePlus