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Frequently Asked Questions for Healthcare Providers

Frequently Asked Questions

Can parents opt out of newborn screening? New York State law mandates that all infants will be screened. Parents can only opt out of testing if the parent or guardian is a member of a recognized religious organization whose teachings and tenets are contrary to this testing. For exempt infants, a signed Refusal of Newborn Screening Form should be submitted to the Newborn Screening Program and a copy retained in the infant’s medical record. Who receives the newborn screening results if they are within acceptable limits? The hospital CEO is required to complete a Newborn Screening Program Hospital Contacts and Designees form each year. On the form, the CEO designates an individual to receive screen negative results. A summary list of newborns with a negative screen is sent daily. The hospital of birth is responsible for notifying the primary care provider of the result. When will results be available? All results are available 7 days after the specimen is received by the Program. Providers are made aware of actionable results as soon as they are available. Who receives the newborn screen results if they are abnormal? The hospital CEO is required to complete a newborn screening program hospital contacts and designees form each year. On the form, the CEO designates an individual at the hospital to receive abnormal results. The abnormal results are also sent to the primary care physician listed on the blood collection form. If the newborn is referred to a specialist, the specialist is also sent the results. How can I lower my unsuitable specimen collection rate? There are a number of ways to train new staff and to provide refresher training. Please visit our Specimen Collection page for information on the proper collection technique. There is also an instructional blood collection video available for viewing. Complimentary DVDs are also available to order through our website, by calling 518-473-7552. Blood Collection and Simple Spot Check posters are also available for ordering. Newborn Screening Program staff can also provide suggestions by phone. Click here to accesss the order form for any of these supplies. Where can I get educational information? Educational materials can be ordered online or by phone at 518-473-7552. Who is responsible for collection of the blood specimen for screening? The birth attendant is responsible for submitting a specimen for each newborn. When should the specimen be taken? Optimal timing is 24-36 hours after birth. The specimen should be taken when the newborn is greater than 24 hours of age, unless they are receiving a blood transfusion or total parenteral nutrition. In these cases, a specimen should be taken prior to these actions; a repeat specimen will need to be drawn at a later time. For additional information visit our Specimen Collection page. What if there is a family history of a disorder? Please notify the Newborn Screening Program at 518-473-7552 if there is a family history of a screened disorder. This information can also be included in the Notes section of the blood collection form. Can the testing of a specimen be expedited? Testing cannot be expedited. Testing is performed as quickly as possible. However, you may request early notification of results if there is a family history of a disorder or the newborn has symptoms of any disorders on the Newborn Screening Program’s panel.
Why do some abnormal results require a repeat specimen while others require additional laboratory testing? If the results of the initial screen reveal a borderline elevation or deficiency, another specimen will be requested. If the results are in the referral range, consultation with a specialist and diagnostic testing are required. How do I know which specialist should be consulted? When you are notified of the abnormal screen by phone, you will be given the name and contact information for a specialist. It is important to work with them to achieve a diagnosis. See our Specialty Care Centers pages for more information. Who is responsible for ordering confirmatory testing? The primary care provider and the specialist should coordinate the diagnostic evaluation and follow-up testing. Can I access results for older children to satisfy the National Collegiate Athletic Association (NCAA) guideline for sickle cell trait testing? The results can be released if requested by the physician of record, who is providing medical care. Title 10 of the New York Codes, Rules and Regulations (NYCRR), Section 58-1.8 states that results are to be used in the conduct of medical practice or in the fulfillment of official duties. A signed attestation form is required. Please note it can take several weeks to obtain results from archived records. Please visit our Obtaining Results page for more complete information. Does a screen negative result mean the infant is not at risk for that condition? A negative result does not exclude the possibility that a newborn has one or more of the disorders on the panel. If clinical suspicion exists for any of the disorders, diagnostic testing is recommended. Why are specific values not reported for all tests? Specific values are not reported because the cut-offs for several tests are based on the interval test values. This “floating” cut-off can fluctuate daily. Floating cut-offs are used to control for climate conditions affecting specimens. What address do I mail the newborn screening blood collection form to? Newborn Screening Program NYS Department of Health Wadsworth Center 120 New Scotland Avenue Albany, NY 12208 I did not receive a patient’s newborn screening results. Is no news good news? No! You should check for and act on the newborn screening results for all babies prior to their first visit or if you see a baby with a medical problem. One in every 300 babies has one of the screened conditions. Visit our Obtaining Results page for ways to obtain screening results. I have received notification of one or more unsuitable specimens for an infant. Could there be a mistake? The Newborn Screening Program staff is trained to inspect specimens and identify problems that could affect the accuracy of the testing. What appears to be an acceptable specimen at the time of collection may develop problems during the drying steps that will render it unsuitable for testing. If you have questions about a specific specimen or would like tips for specimen collection, please contact our Program at (518) 473-7552. What is the maximum age at which a child can be screened? The Newborn Screening Program will accept an initial specimen for a child up to one year of age; however, our tests are optimized for newborns (< 28 days old). How do I access newborn screening results for my patients? Screen negative results for specimens collected at the hospital of birth are sent to the hospital in summary form. The hospital is then responsible for forwarding the results to the newborn’s primary care physician. If the results are abnormal, the primary care provider recorded on the blood collection form will be contacted by phone and letter. Results for specimens collected in a physician’s office will be reported back to that physician. Results can also be obtained by using the web application (secure remote viewer). How do I get access to the Newborn Screening Web Application (secure remote viewer)? Please visit our Obtaining Results page for complete instructions on accessing results from our web applications and other mechanisms for obtaining results How do I access the NYS DOH Health Commerce System? Instructions for accessing the Health Commerce System are found on our Obtaining Results page. Who is responsible for collecting a repeat specimen if the initial one was not suitable, or revealed a borderline elevation or deficiency? The hospital of birth or birth attendant is responsible for ensuring that a repeat specimen is collected. This repeat specimen may be collected by the birth hospital or the newborn’s primary care physician. If you know the baby requires a repeat specimen, you are strongly encouraged to collect it. Who is responsible for obtaining a suitable newborn screening specimen if the infant was not born at a hospital? The birth attendant is responsible for ensuring that a suitable specimen is collected. Where can I get guidance on collecting a suitable specimen? Visit our Specimen Collection page for online instructions for collecting a suitable specimen. An instructional video is also available on our website. Complimentary DVDs are also available to order through our website, by calling 518-473-7552, or by calling 1-800-535-3079. Blood Collection and Simple Spot Check posters are also available for ordering. Newborn Screening Program staff can also provide suggestions by phone.
When can I expect my scheduled shipment of blood collection forms? Blood collection forms are shipped to most birthing hospitals quarterly (Jan, April, July, Oct). Hospitals with fewer than 400 births per year are sent their yearly supply in October. How do I order newborn screening blood collection forms, or other educational materials (such as For Your Baby's Health brochures)? All supplies can be ordered from our website or by calling 518-473-9773. Please be sure to give us ample notice when you order supplies. If our facility runs out of blood collection forms before our next shipment arrives, is it OK to borrow them from another facility? Absolutely, or call 518-473-9773 and let us know how many forms you would need to hold you over until the next quarterly shipment and we will mail them to you as soon as we can. Please be sure to give us ample notice when you order supplies. Who are the blood collection forms sent to at my hospital? Usually this person is the Newborn Coordinator, but anyone can be assigned the task of receiving supplies. The hospital CEO is required to complete a Newborn Screening Program Hospital Contacts and Designee form each year. On the form, the CEO designates an individual to receive blood collection forms and educational materials (such as For Your Baby's Health brochures). What if the person the CEO designated is no longer at the hospital, or we want to change the designee? Download the Newborn Screening Program Hospital Contacts and Designee form from our website. The changed/updated forms must be filled out completely and signed by the CEO of the hospital. Mail it back to us and we will update our records. How do you determine how many blood collection forms are sent to each hospital? We take the total number of specimens we receive from your hospital the previous 12 months (all initial and repeat specimens), and add 10% to that number. What is the maximum number of For Your Baby's Health brochures a hospital can order? Hospitals may order up to 1000 for some languages, 500 for others, depending on our supply at the time you place your order. How long will it take to receive my order? Plan on 10 business days, but usually it takes less than that.
Why does my hospital need to do in order to prepare for RDE? Call the Newborn Screening Program at (518) 486-2911. We will discuss the procedure for entering data remotely and then refer you to our software vendor Neometrics, who will set up a training session either remotely or in person depending on your location. Newborn Screening results can be viewed through the HCS via a secure remote viewer (SRV). What is Remote Demographic Entry (RDE)? RDE is used by hospitals to enter and transmit data into a secure web-based application through the Health Commerce System (HCS). This method uses a web-based screen and form that allows hospital staff to enter demographic data. Hospitals need to have appropriate staff trained for use of this service. RDE helps hospitals minimize manual completion of the blood collection form.

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