QUESTIONS FROM NBS WEB CONFERENCE AUDIENCE
and POST CONFERENCE QUESTIONS
OCTOBER 26, 2011
1. Who qualifies for the label maker?
Contact your local hearing coordinator or Marcia Fort of the Hearing Program (919-707-5635) for information about providers of the labels.
2. With the hemoglobin electrophoresis testing, can we test at our facility instead of sending the filter paper in? If not, where do we get the hemoglobin electrophoresis filter paper?
It was not quite clear what testing (initial or follow-up testing) and what kind of patient you are referring, newborn or adult. I am assuming that you are talking about follow-up testing.
Yes. You can test at your facility instead of sending the filter paper to the State Lab, but please send us the results so our follow-up staff can have the appropriate information concerning the case.You can order the hemoglobin electrophoresis form online at . If you have any questions, please call our mailroom at (919)733-7656.
3. Can the mother be notified about unsat and errors in data that the specimen needs repeating? As a follow-up, mothers are notified about abnormal findings; the mother has the right to know that the specimen sent will not be tested at all due to errors, etc.
The follow up proceduresfor abnormal results and unsatisfactory specimen are two different protocols. For abnormal results, our follow up staff will call the physician of record even before the hard copy results are sent out. If we are unable to locate the health care provider for whatever reason, a call will be made to the mother by the follow-up staff due to the urgency of the result. The hard copy report will follow. For an unsatisfactory specimen, a report and a notice (not a call) will be sent to the health care provider. We would strongly encourage the parents to contact their health care providers for results and interpretations.
4. Is there a charge for parents’ Hemoglobin testing?
The State Laboratory does not charge for testing.
5. If a page tears off on the collection form and we cannot tape/clip it, how do we send it in? Do we have to restick?
The filter paper itself should never be removed from the rest of the form and reattached.If a page has become detached, securely paperclip it in order with the rest of the form before mailing.
6. For the race on the newborn screening, do we mark the race of the mother only or both the mother and father?
Mark all that apply.
7. If checking for a newborn screening online and it reads “not received” do you need to repeat?
Please contact the State Lab Newborn Screening /Clinical Chemistry unit at 919-733-3937.
8. Should the newborn screening be done 24 hours after birth or 24 hours after the first feeding?
Collect the newborn screening at least 24 hours after birth.
9. Concerning NCAA athletes, can we send those samples to the State Laboratory for sickle testing (whole blood)?
According to our policy, we do not accept sickle cell testing for NCAA athletes since it is not a public health function. The health care providers can refer their patients to the following facilities for testing:
Laboratory Corporation of America
1447 York Court
Burlington, NC27215.
Local Telephone: 336-584-5171.
State Toll-free Telephone: 800-331-2843
Spectrum Laboratory Network
Craig McCleary, 336-315-6330 (or Carol Skeen in sales 336-664-6195)
4380 Federal Drive, Suite 100
Greensboro, NC27410
Telephone: (336) 664-6100 or (888) 664-7601
Perkin Elmer Genetics
Robert Wise, Laboratory Director
90 Emerson Lane
Bridgeville, PA15017
Telephone: 866-463-6436 (extension 120)
Carolinas Healthcare Systems/Carolinas Laboratory Network
1000 Blythe Boulevard
Charlotte, NC 28203
Client Services 1-800-646-6203 or 704-355-9350
10. When a repeat screen is needed and the baby’s name has changed what name do we place on the newborn screening form?
Place the infant’s first and last name as it is at the time of collection. Mother’s first and last name should be exactly the same as it was on the first newborn screening sample/report.
11. Can we use the barcode to look up results?
Yes. The barcode is a straightforward way to search for newborn screening results online.
12. What is the minimum number of circles that have to be filled for testing?
All five of the circles should be filled.
13. As Dr. Chaing stated that the lab is unable to determine the amount of affected genes present in hemoglobin Barts, do you recommend that the patient’s primary care provider perform further testing or follow-up?
Please consult with a pediatric hematologist.
Here are recommendations from a pediatric hematologist:
1. For the baby--nothing more needs to be done. We can assume that the baby has a one or two gene deletion alpha thalassemia. The result should be kept and will be useful information should the baby be microcytic and have a slight anemia in the future.
2. If the baby's parents are Asian, the recommendation is for DNA testing for alpha globin gene deletion and mutation. It is important to stress both deletion and mutation because some labs only do deletion analysis. The parents should have genetic counseling on the results.
3. If the baby's parents are African American and no Asian ancestry mixed in, DNA testing is not routinely recommended.
14. Should hemoglobin electrophoresis filter papers be dried flat as well?
Yes. They should be handled in the same manner as the newborn screening filter forms.
15. How long do you keep the blood spots?
Filter paper specimens, including the attached demographics, are retained at the State Laboratory for five years after receipt.
16. What should be filled in on the newborn screening form if the infant is taking more than one type of feeding?
Select all types of feeding that the infant has received prior to the collection.
17. Should newborn screening specimens be sent to the State Lab when the patient has expired?
Yes. We will provide the result to the health care provider after newborn screening is completed.Please note on the newborn screening specimen that the infant has expired and this information will be placed in the specimen’s computer log.
18. Can the hemoglobin electrophoresis form #1859 be used on teenagers that need to be tested for sickle cell for school?
Please see answer to question #9.
19. How can a facility obtain the equipment needed to do the labels?
Contact Marcia Fort of the Hearing Program (919-707-5635) for information about use of the hearing link computer and programming.