1. NEWBORN BLOODSPOT - IMPROVING PRACTICE

2. Screening Tests Offered from 4 th Oct 2010: Phenylketonuria (PKU) -1965 Congenital Hypothyroidism (CHT) -1979 Cystic Fibrosis (CF) – 2003 Medium Chain Medium chain CoA Dehydrogenase Deficiency (MCADD) Sickle Cell Disorders (SCD)

3. NEW CARD - MUST Use new card (BLUE) All old cards (PINK) must be returned to the laboratory

4. NEW CARD (Blue writing)

5. Date of Birth- Important for all tests. The baby should be at least 96 hours of age before the specimen is taken. Date of specimen - Important for IRT. After 42 days the IRT test result is unreliable and false negative results may occur. Cards without dates will not be issued with a result until the dates have been established. Lack of information may result in the request for a second specimen.

6. Important in order to contact parents if immediate action is required ADDED

7. Date of First Milk Feed is no longer required REMOVED

8. Important in CF screening as the laboratory processes the specimen according to this. Also important in screening for Sickle Cell Disorders Ancestry Code

9. Ancestry code – important for CF The laboratory processes the specimens according to the ancestry group. Also important for SCD CODES HAVE CHANGED!

10. UK is now group F (was A)

11. Note Expiry date on card Specimens that have been collected using expired cards are UNSUITABLE and will need to be REPEATED

12. Note Expiry date

13. RANK Twins etc.

15. CHANGED Blood Collection – Brief instructions Refer to guidelines

16. CHI number is essential for identification Currently cards are received without a CHI number. Also, the same CHI number has been used on more than one baby’s card therefore care must be taken when entering the CHI number from a computer screen or a sheet of paper.

17. Surname and Date of Birth is required on the blood spot portion. Blood spot portion is separated from demographics

18. Important to know this for current tests as a repeat specimen is required at 72 hours post transfusion. For Sickle Cell screening a repeat will be required at 4 months post transfusion. This also includes intrauterine transfusions. Recommendation - collect a pre-transfusion blood spot specimen from babies in SCBU or NNU for SCD screening.

19. COMMENTS BOX: Meconium Ileus, Family History – sibs etc., Mum on Thyroxine, No Storage, No Research, Assisted Conception. Intrauterine Transfusions If the parents refuse to allow one of the tests to be done then this should be marked in the box e.g. Parent refused CF testing.

20. The number of spots required is NOT related to No Storage or No Research written in the Comments Box. All 5 spots are required for testing. This will be even more important when testing for MCADD and SCD begins.

22. Specimens that are more than 14 days in transit will be UNSUITABLE for testing and will need to be REPEATED.

23. Use Freepost Envelopes – FREEPOST SCO7580 Discard all old envelopes

24. Please: Use FREEPOST ENVELOPES (SCO7580) Air dry Post Immediately Be aware of postal strikes and local procedures for this.

25. Please don’t: Include lancets in the envelopes Batch in glassines Delay Posting

26. QUALITY OF SPOTS

27. Fill blood through to the back of the card The blood specimen on the front of the card looks adequate BUT when the reverse side of the card is examined it can clearly be seen that the blood has not soaked through to the back. When the 3mm disc is punched there are white margins on the disc. This will lead to unreliable levels and could lead to a false negative report. A repeat specimen has to be submitted for analysis before a reliable screening result can be issued.

29. Jan 2010 = 1.54%

30. Insufficient Blood - Year% 20000.42 20010.82 20021.14 20031.39 20040.93 20050.98 20060.55 20070.59 20080.55 20091.22 (750 specimens) Pre – MCADD & SCD Screening

32. Unsuitable for testing

33. Possibly applied from the back as well as the front of the card

34. Layered