|
Taking the Newborn Screening Sample
Sample Transportation
Newborn Screening Results
General Questions
How do I take an NBS sample?
Whose responsibility is it to obtain the NBS sample?
It is the responsibility of the hospital/midwifery practice in which the infant is born to obtain the NBS. All sample repeat requests go to the original submitter.
An infant is going to be discharged prior to 24 hrs. Should I take a NBS?
Yes. A NBS sample should be taken on every infant prior to discharge. If this happens before 24 hours, parents should be informed that a repeat NBS after 24 hours must be done and informed how to complete the NBS.
An infant is going to be transfused. Should I take the NBS prior to the transfusion?
Yes. If possible, it is best to take the NBS prior to a blood transfusion. Blood transfusions are known to affect the results of hemoglobin and galactosemia screens. If the NBS has been taken after a blood transfusion, a repeat sample should be taken in 4 months to complete screening.
An infant has received FFP (fresh frozen plasma) and platelets. Does this constitute a blood transfusion?
This is not considered a blood transfusion for NBS purposes. Provided that an infant has not received red blood cells, you may indicate “no” for transfusion status.
The infant’s parents are refusing the NBS. What should I do?
If you have thoroughly explained NBS to the parents and they choose to decline the test, it is extremely important to document it in the infant’s records. You may wish to have the parents sign a "Refusal of Treatment" form. At this time, there is no formal method in place to inform the Ontario Newborn Screening Program that a family has declined testing.
An infant is premature. When should I take the NBS?
For infants who are premature (gestational age at birth is less than 37 weeks) it is recommended that the NBS is done after 5 days of life; however, if an infant will be discharged prior to this time, we recommend taking the NBS before discharge.
The infant is being adopted. Whose demographic information should be listed in the “mother” section?
Please indicate that the infant is being adopted and include the adoptive mother’s information (as she will be caring for the infant and would be the person to contact in the event the infant screened positive). The new version of the Blood Dot Card has a check box for "Adoption."
The infant is in the care of Children’s Aid Society (CAS). What information should I put in the “mother” section?
Please clearly indicate that the infant is in CAS care and provide the infant’s caseworker’s name and contact phone number (the caseworker would be the person to contact in the event the infant screened positive). The new version of the Blood Dot Card has a check box for "CAS care."
Can I put the NBS samples in a plastic bag in the mailing envelope?
No. It is not standard practice to place the cards in a plastic bag as condensation can damage the samples. The new NBS envelopes are made of Tyvek and are thus water resistant.
How often should we send in NBS samples?
Daily. Newborn screening samples can be gathered together and sent daily to the NBS Laboratory in one of the prepaid Canada Post ExpressPost envelopes that have been provided to each submitter. Please do not wait several days to send in the NBS sample. Delays could have serious consequences for affected infants and may render the sample unsatisfactory, requiring a repeat NBS and further delaying the process.
How do I order more NBS cards/envelops?
We have entered into a relationship with VWR International to provide logistics and distribution services for the NBS cards/envelopes. For ordering instructions, please click here.
The infant’s results have arrived but the infant’s demographic information is incorrect. What should I do?
Please call the ONSP office (613-738-3222 option 0) to inform us of incorrect demographic information (for example: incorrect gender, wrong health card number, wrong date of birth/sample collection, etc.). If necessary, we can issue an amended report with the correct information for you.
I have received a request for a repeat sample on an infant who has been discharged from the hospital. Whose responsibility is it to ensure that the infant has a repeat NBS?
It is the responsibility of the original submitter to inform the family that a repeat sample is required and provide the family with information so that they may have the repeat NBS taken.
An infant is sick and the physician would like to rule out metabolic disease. Should I do a NBS?
No. Newborn screening is a screen, and cannot substitute for diagnostic testing.
What is the fee for newborn screening?
Currently, newborn screening is free for all babies born in Ontario including those who are not residents and do not have OHIP.
An infant has a family history of one of the disorders screened for. Is NBS sufficient testing to rule out these disorders?
No. NBS is a screen only, and cannot replace diagnostic testing. If there is a significant family history of a condition (for example, an affected sibling), diagnostic testing should be performed to rule out that condition in an infant.
An infant who is several months old has not had a NBS. Can I take a NBS for this baby?
Yes. However, the newborn screen is the most accurate in the newborn period and most of the conditions screened for become apparent in early infancy.
An infant is going to be transferred to another hospital. Should we do a NBS?
Yes. It is important to take a NBS and to note this in the information sent to the hospital.
How long does the ONSP store the NBS cards?
At the present time, NBS cards are considered a part of the child’s medical record and are kept until the child is 19 years old. The demographic information and testing results on each baby are stored permanently in our database.
Who is responsible for sending the infant’s newborn screening results to the infant’s pediatrician/family physician?
This is the responsibility of the submitting health care provider. At this time, the ONSP reports results to the submitting health care provider only.
What is the turn around time for NBS reports?
The ONSP aims to have reports for every baby within three business days of the sample receipt.
We received a report indicating that an infant has screened positive for a disease. What is the submitting health care provider's responsibility?
It should clearly indicate (in red) on the NBS report that ONSP physicians have referred the baby with the screen positive result to physicians at a specified regional treatment centre, who are responsible for further diagnostic evaluation of the infant, for initiation of treatment if indicated, and for reporting the outcome of the diagnostic evaluation to the referring physician at the ONSP. In general, no further follow-up on your part is required. If you have any concerns, or if the follow-up plans noted are unclear, please contact the ONSP office at 613-738-3222 option 0.
A baby under my care has screened positive for a disease. Will the baby's personal health information be shared with other health care providers?
ONSP physicians will refer the baby to physicians at a regional treatment centre for follow-up diagnostic testing. In some cases, ONSP staff work directly with health care providers and families to arrange testing. The treatment centre physicians will provide the referring physician at the ONSP with follow-up information about the baby, as is the case for any medical referral. This includes medical information, which tests were done, the results of those tests, and whether or not the baby truly has the disease (for an example of a Diagnostic Evaluation Form, please click here.
This feedback allows the ONSP to make sure that every baby receives appropriate and timely care. The information from the evaluation form will be used to make sure that the ONSP provides the best possible service to all babies born in Ontario. The ONSP health care providers review this information and may contact the baby's family, health care provider, or the physicians at the regional treatment centre if we have questions about the baby's care. Parents/guardians may choose not to have their baby's health information shared. In this case, they should be encouraged to discuss this with their health care provider or contact the ONSP.
It has been several weeks since I sent in a NBS sample and I have not received a report. What should I do?
Please call the ONSP office at 613-738-3222 option 0, and we would be happy to look into this for you.
What measures does the ONSP take to ensure that patient information is secure?
The ONSP has implemented multiple safeguards to ensure the security and accuracy of the personal health information collected as part of the newborn screening process.
All personal health information is stored within the baby’s record in our electronic information management system that is specifically designed for Newborn Screening Programs. Protected by network firewalls and login/password access, the system is accessible only to ONSP staff and it allows privileges to be set for users based on their role in the program, thereby limiting access to information on a “need to know” basis. The system also provides tools for ensuring accuracy, identifying errors, auditing, and specimen tracking, designed to meet privacy requirements and laboratory standards.
The program is located at the Children’s Hospital of Eastern Ontario and is therefore supported by the robust IT infrastructure in place and well defined policies and procedures around access control and appropriate use of information. Our facilities and storage areas are secure, requiring key and swipecard access.
What happens to the newborn screening sample when testing is complete?
At the present time in
Ontario, blood spots are stored for 19 years, as they have traditionally been regarded as part of a child’s medical record. The primary purpose of the spot is for screening infants for the conditions noted here. However, other secondary uses are possible, including:
a) Quality control and quality assurance within the NBS laboratory (i.e. ensuring that the laboratory and its testing are functioning properly);
b) Retesting of the sample to assist in making a diagnosis and at the request of health care providers involved in the care of the baby;
c) Usage after a legal warrant or court order (e.g. by the Coroner’s office for the investigation of a sudden infant death);
d) Release of a portion of a sample to a third party with the written consent of the individual or their surrogate decision maker (usually a parent);
e) Fully deidentified samples may be used for research approved by a research ethics board, and in compliance with the provisions in the Personal Health Information Privacy Act (PHIPA). Identified samples can only be used for research with the written consent of the individual or their surrogate decision maker.
| 
