Neonatal Thyroid Screening Analysis of Three Years Experience

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1 Newborn Screening in Jordan Neonatal Thyroid Screening Analysis of Three Years Experience Done By Dr. I tidal. Zaidan Done By Clinical i l Pathologist Dr. I tidal Zaidan Head of Prince Clinical Hamza Pathologist Head of Prince Hamza Hospital lm Medical Lab. llb Lab. Hospital

2 Introduction Newborn screening is an essential, preventive public health program for early identification of disorders, that can lead to catastrophic health hproblems. The cost of these disorders if left untreated is enormous, both in human suffering & in economic terms.

3 Routine screening 1 What is the purpose of the newborn screening program? To prevent a number of treatable disorders by testing all newborns in Jordan. 2 Why choose newborn screening program? A It is considered an inexpensive, reliable method of testing. B It is considered an effective treatment & intervention way. C If not applied, babies may die, & develop severe mental retardation, although they may appear normal at birth. D The incidence of certain disordres is more frequent.

4 3 How did newborn screening { NBS} program start in Jordan? In 1997, Jordan had participated in NBS for congenital Hypothyroidism { CH} study in the middle east supported by IAEA. The results of a pilot study revealed the incidence of CH was 1:1700 onlyat Al Basheer hospital.

5 4 What is the chance my baby has a disorder thatcanbedetectedby screening? The chance is very small, but NBS provides an early opportunity to detect certain disorders before symptoms appear.

6 5 How are the tests done? f d f h l ikd f Ages from 3 14days, few heel prick drops of blood, on special filter paper are needed.

7 6 Who decides which disorders are included in NBS? Dr. I tidal Zaidan, clinical pathologist, { former head of Al Basheer medical lab.}, & head of Prince Hamza medical lab. {now}. Dr.Sanaa Saqf Alhait, pediatrician & former head of Genetic & Inherited diseases division. Both initiated this screening program. In order to formalize the program, both doctors requested M.O.H to form a national committee. The National Committee for CH & Inherited Diseases was formed by a number of doctors, pediatricians, ethicists, clinical pathologists, UNRWA representatives, & multiple representatives from different sectors, does which disorders to include. For a disorder to be included in the list, the following must be true: the disorder must be treatable. there is an efficient way of lab. Testing. early medical intervention would benefit the infant.

8 7 May I refuse the tests? NBS must be legistlated & a refusal form must be available.

9 8 How are results reported & how I would be notified, if any baby needs special care? Screening results are reported in Prince Hamza Hospital Medical Labs. & forwarded to Non CommunicableDiseasesDirectorate. In case of abnormal result, family in concern will be notified.

10 9 Does that mean that the bb baby has a disorder? d Not always, due to: unsatisfactory specimen. Too early specimen. abnormal test results: premature or low birth weight newborns are more likely to have abnormal test results, on the first specimen, even a disorder not present.

11 10 For an effective accomplishment of the screening program, collaborative efforts are needed: practitioners are responsible for collection, handling, & lbli labeling of both the first & second screening specimens, follow up, medical care & the provision ii of parent education support & referral lto special care when needed. Health medical laboratories are responsible for tracking abnormal screenings & diagnosed cases, linking confirmed cases to medical care & serving as a source of information for practitioners, parents & the public about the newborn screening disorders. M.O.H is responsible for ensuring, monitoring, auditing roles, recognition, funding, & developing a method for continious evaluation & improvement.

12 11 History of NBS in Jordan: NBS for CH began at Al Basheer hospital from as pilot study in cooperation with IAEA on 17,000 newborns, 1:1700 was affected. Meanwhile, 147 phenyleketonuria { PKU} cases were detected in our labs, & required to be included in the National Screening Program. Several effective training programs were held for M.O.H officials. An awareness campaign was launched to enlighten people on the importance of screening.

13 12 General Statistics: Year Total number examined CH PKU

14 Laboratory team: Dr.I tidal zaidan, clinical pathologist, Head of Prince Hamza Med. Lab.,& Head of LaboratoryNewborn Screening program. Hind Othman, technician supervisor. Nadia Alaqrabawi, technician. Baraa Alhiari, technician. Tahani Ghanem, technician. Rusayla Ald oom, technician. Samah Alja fari fari, IT I.T.

15 Clinical i l Team: Dr. Basem Al Zu bi bi, pediatric endocrine specialist. Dr.Sanaa Saqf Alhait, pediatric genetic diseases specialist. Dr. Safwan Dababneh, head of genetic diseases in MOH M.O.H. Dr. Lateefa Maraqa, Pediatric Specialist. Dr. Rajaa Badarneh, data analysis specialist.

16 Facilitator team: Dr. Sa d Kharabsheh. Dr. Adel Albulbaisi. Dr. Bassam Hijjawi, Head of Primary Health Care Directorate Dr. Mohammad Altarawneh, Head of noncommunicablediseases Directorate. Dr.I tidal Zaidan Clinical Pathologist Head of Prince Hamza Medical Laboratory.

17 The End

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