The document outlines Kuwait's national newborn screening program. It discusses the purpose of newborn screening programs, the history of Kuwait's program since 1965, and its current protocols. Kuwait's program screens for 22 disorders using tandem mass spectrometry. From 2015-2018, over 225,000 newborns were screened and 483 cases were confirmed, with an incidence rate of 1 in 467 newborns. The statistics help plan health services and address future needs as the population grows.

1. Newborn Screening: Kuwait experience.
7th KMGC CONFERENCE 2019
MAY R. AL-RUSHOOD, MD
SPECIALIST, NEWBORN SCREENING LABORATORY
KUWAIT MEDICAL GENETIC CENTER

4. Outlines:
 Why newborn screening programs?
 Kuwait National Newborn Screening Program and Other NBS programs.
 Kuwait Newborn screening program:
 Protocols and Regulations.
 A glance at the statistics.

7. What is the purpose of newborn screening?*
 To detect potentially fatal or disabling conditions in newborns as early as
possible, often before the infant displays any signs or symptoms of a
disease or condition.
 Such early detection allows treatment to begin immediately, which reduces
or even eliminates the effects of the condition.
 If left untreated might lead to lifelong consequences.
 Intellectual, developmental, and physical disabilities;
 Even death.
*Eunice Kennedy Shriver National Institute Of Child Health and Human Development.

8. Early principles of practice of screening for diseases
*Journal of chronic diseases volume 2, issue 4, October 1955, pages 367-374.

9. Early principles of practice of screening for diseases
Wilson and Junger classic screening criteria (1968)*
* Wilson JMG, Jungner G. Principles and practice of screening for disease Geneva: WHO; 1968. Available from:
http://www.who.int/bulletin/volumes/86/4/07-050112BP.pdf

10. WHO MODIFIED SCREENING CRITERIA IN 2008*
* Andermann A, Blancquaert I, Beauchamp S, Déry V. Revisiting Wilson and Jungner in the genomic age: a review of screening
criteria over the past 40 years. Bull World Health Organ. 2008;86(4):317–9.

11. Newborn screening in Kuwait

12. History of newborn screening in Kuwait:*
 1965- screening for Phenylketonuria (PKU) as a pilot study.
 1978 – Screening for congenital hypothyroidism (CH) as a pilot study.
 2005 – Screening of PKU and CH start in Kuwait Medical Genetic Center
after receiving DELFIA system.
 2007 – Screening of PKU, CH, 17OH progesterone, Galactosemia and
biotindase deficiency start in Kuwait Medical Genetic Center after
receiving DELFIA system.
 2014 – Screening of 22 diseases in Kuwait started after receiving Tandem
mass spectrometry system.
 October 2014 , launching the Kuwait National Newborn Screening
Program.
* Kuwait NBS standards operating policy, revised in 2017.

13. NBS committee 2014*
 Dr. Mona Alkhawari committee chair
 Dr. Laila Bastaki committee co –chair
 Miss Farah Dashti director of equipment directorate
 Dr. Ibraheem AlMuzairi director of central laboratory service
 Dr. Rima AlSawan Farwaniya hospital
 Dr. Nawal AlKAzimi Maternity hospital
 Dr. Nawal Makhseed Jahra hospital
 Dr. Jassim Abbas Sabah hospital
 Dr. Ahmad AlSarraf Kuwait cancer center
 Ashraf Alghout head of accounting MOH
* Kuwait NBS standards operating policy

14. NUMBER OF NB DISORDERS SCREENED AT KMGC:
0
5
10
15
20
25
2005 2007 2014 ( INTRODUCING TANDEM
MASS SPECTROMETRY
0
Chart Title
Series 1 Series 2 Series 3

15. Kuwait Newborn Screening:

16. How many disorders do we have to screen for?
 What is the right number??

17. *Save babies through screening foundation

18. RUSP:*
 What disorders are newborns screened for in the United States?
 The Advisory Committee on Heritable Disorders in Newborns and Children
(ACHDNC) issues a Recommended Universal Screening Panel (RUSP) that
identifies a number of core conditions—those for which screening is highly
recommended—and secondary conditions, for which screening is optional. As
of November 2016, the RUSP included 34 core conditions and 26
secondary conditions.
 On July 2, 2018 Spinal Muscular Atrophy was added to the RUSP, bringing
the total number of conditions on the list to 35.
*The Advisory Committee on Heritable Disorders in Newborns and Children (report to congress 2013-2017).
*https://www.nichd.nih.gov/health/topics/newborn/conditioninfo/disorders

19. RUSP:
 While all states require newborn screening for every infant, the number of
conditions on state screening panels vary.
 The committee’s recommendations are based on the Newborn Screening:
Towards a Uniform Screening Panel and System and on current research
evidence, which means that the number of core and secondary conditions
may change.
*The Advisory Committee on Heritable Disorders in Newborns and Children (report to congress 2013-2017)
*https://www.nichd.nih.gov/health/topics/newborn/conditioninfo/disorders

25. 0
5
10
15
20
25
30
35
40
45
50
Kuwait USA UK KSA
Chart Title
Series 1 Series 2 Series 3

27. Newborn screening in KSA launched 2005: Screen for 16 disorders.*
* Alfadhel M, Al Othaim A, Al Saif S, Al Mutairi F, Alsayed M, Rahbee.expanded Newborn Screening Program in Saudi Arabia: Incidence of
screened disorders. J Paediatr Child Health. 2017 Jun;53(6):585-591.

28. Distribution of the detected cases and incidence of
each screened disorder. Kuwait NBS (2015-2018):
 Total of samples screened 225,605.
 22 disorders are screened.

31. Kuwait NBS 2015-2018*
 About 225,605 newborns were screened.
 483 cases were confirmed.
 Incidence rate: 1: 467 newborns.
 16 hospitals are included.
 Screen for 22 diseases
*NBS statistics 2018

33. External quality control and proficiency testing
 Participate in CDC programs
 EQC
 PROFINCIENCY TESTING

37. 2018

38. 2018

39. 2018

40. 2018

41. **NBS standards of operating policy (Updated on 2017).

44. **NBS standards operating policy (Updated on 2017).

45. Awareness:
 Meetings
 Public education: malls, schools, polyclinics.
 Brochures
 Tv programs

46. Public education and campaigns

47. Take home message:
1. Recognize the importance of the National Newborn Screening Program
in the State of Kuwait as a public preventive service provided by the
Ministry of Health (MOH). All hospitals are included, private and public,
this is regulated by law so all babies born in Kuwait are screened by the
program.
2. The DATA provided by the annual statistics of the program helps in
understanding the needs and helps in better planning for the services
provided by the MOH in many aspects.
3. To address the future needs of the program as the population grows. For
example, Automation can improve the turnaround time and can be more
cost- effective.

48. future
 Introducing Automated DELFIA. Growing number of samples!
 Screening for more conditions. RUSP!
 Establishing NBSO (under the pediatric unit) at the new Jaber Al Ahmad
hospital as the Maternity wards start to operate.