• Filling out the newborn screening form… Accurately Completely LegiblyCould be a matter of life and death
• Inaccurate or missing information may adversely affect screening results and/or the ability to quickly contact the infant’s care provider in the event of an abnormal screening result.
• Any delay may put the child’s health at risk.
• The specimen submitter is legally responsible for the accuracy and completeness of the information on the newborn screening card.
Remember to remove 2nd ply for facility’s records.
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Please write firmly in blue or black ink to ensure that all information is transferred between carbon copies. Besides result interpretation requiring certain data elements, it is also imperative in order to find and follow-up on an identified at risk infant.
Health Level 7 (HL7)
• Placement of HL7 sticker has changed
• Please do not write in the box “FOR SHL USE ONLY”
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If your facility currently electronically orders newborn screening tests, the placement of the sticker on the form has changed. Previously the instruction was to place on the back of the top ply. Now there is a box in the lower right hand corner designated for HL7 sticker. If you do not order newborn screening tests electronically, please leave this box blank. Do not place any labels here or write in this space. “For SHL Use ONLY” is used by the newborn screening lab when the sample is received. Please do not write or place any labels in this area.
Sample Information
Initial Screen= 1st submissionRepeat Screen= Any subsequent submissions received after the initial screen, even if 1st submission was rejected due to poor quality, early collection, etc.
Changes• Collection information
moved to top of form• Collection date format
YYYY MM DD
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Collector- this field is intended for facility use primarily. Each facility can decide how they want to record collector information. Anything that will uniquely identify a collector can be written here such as initials, last name, employee ID number, etc).
Infant Information
Changes• Current card uses the term “chart
number” and new form uses MRN• DOB format YYYY/MM/DD
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MRN -write reference number that is meaningful to your facility when receiving results Last Name -important to list last name for infant. Even if a first name has not been chosen, please record the last name. -Please record the last name the infant will go by at discharge. This helps locate and identify the child post-discharge when following up on abnormal results. -Providing incorrect name could potentially cause delay in treatment and negatively impact infant’s health First Name -record if known at time of collection and submission. If not known please do not delay sending in screen. -If the guardians have not yet chosen a first name, leave this field blank. DOB -8 digit format (yyyy/mm/dd) Time of birth -24 hour clock (HH:MM) -Validity of test results are specific to the exact age (in hours) of the infant so an accurate birth time is crucial. Infant’s Gender: Please mark M for male or F for female. If unknown or ambiguous genitalia, write unknown in the Infant’s Gender box. This helps with the identification of patient.
Infant Informationcontinued
Changes• Infant’s street address• List multiple births using A,B,C etc
Only applicable for this pregnancy
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Infant’s street address -Important to record where infant will reside in order to locate baby if necessary. Please put complete address. Multiple Births -If infant is one of a set of multiple births (twins, triplets, etc) record the birth order of the infant. A=first born, B=second born etc. -If single birth you can leave blank, put a line through it or cross it out. -This field is not in reference to the birth order of ALL pregnancies but the birth order of this one pregnancy. GA -gestation at time of birth. Record in completed weeks only, no rounding up. -Accurate gestational age is critical for analyzing the results of newborn screening tests. This includes all collections - initial and repeat screens. -If unknown, please write unknown.
Infant Informationcontinued
Changes• Feeding method options changed• Transfusion date format YYYY MM DD
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Feeding Method: -Check all types of feeding that apply within the last 24 hours. For example, if the infant has received both TPN and breast milk in the last 24 hours, check both boxes. -Breast milk includes milk sourced from biological mother or donor milk. -Formulas includes all special formulas and additives (e.g. Human Milk Fortifier, Beneprotein, etc.) -Total Parental Nutrition (TPN) includes, but is not limited to Neonatal Venous Nutrition (NVN), Peripheral Parenteral Nutrition (PVN), Hyper alimentation (Hyperal), Starter TPN, any supplementation that includes amino acids, and/or any additional TPN products not mentioned. -If infant is receiving fluids only and/or no other feeding method listed, check “None of the Above” -No need to list fluids such as D10. Current Weight (g): -Record the infant’s weight in grams at time of specimen collection. -Do not leave blank. It is important to correctly record the infant’s weight for accurate test results. Transfusion (Any Blood Products) -Must be filled out as Y or N. Used for result interpretation. Refers to transfusion given before NBS is collected -If multiple transfusions, record the most recent only. -Transfusion includes ALL blood products including but not limited to red blood cells, plasma, immunoglobulins, and platelets. Albumin DOES NOT affect NBS results. -If baby received a transfusion before delivery (intrauterine), please mark “Yes” and record the date of the most recent transfusion.
Infant Informationcontinued
Changes• NICU box moved• Meconium Ileus box added
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NICU -check if patient in NICU, PICU or other high acuity level care at time of collection. -if not leave blank Meconium Ileus --Meconium ileus is a bowel obstruction that occurs when the meconium in infant’s intestine is even thicker and stickier than normal meconium, creating a blockage in a part of the small intestine called the ileum. -Check the box ONLY IF the infant has or is suspected to have meconium ileus. -If no meconium ileus is suspected, leave blank. -Meconium Ileus is known to interfere with the screening for cystic fibrosis. If meconium ileus is suspected, the screening algorithm for cystic fibrosis will change.
Submitter Information
Changes• Facility ID’s are changing in our new
LIMS system so this field was removed.
• Pre-printed label with submitter name and address will be provided with forms instead to accurately identify submitter.
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-Apply the pre-printed label to the top ply of the form. -Do not share forms or labels with other facilities as this can lead to results being sent to wrong organizations. T -The submitter information provided is used for result reporting purposes as well as billing. Please provide accurate and complete information. If no label is provided, please write the record the FULL name of the hospital, clinic, or midwife who collected the specimen. Please do not abbreviate. -Write the street address of the submitter (vital now that so many institutions have the same name and/or are part of a larger affiliation). -Write the city, state and zip code. If all that is written is “mercy” and no other information, we are unable to determine where the sample came from and where a report needs to be sent. There are multiple Mercy’s in Iowa. If your organization requires clinic or satellite location samples to be processed through their main lab, please put down the main lab information so we get a report to the appropriate section.
Guardian Information
Changes• Changed section from Mother to Guardian.
• If biological mother is the legal guardian, please provide her information.• Added Box to determine relation to infant: Mother or Other Guardian
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Guardian is considered the person who has the legal authority to care for the infant. In most cases this will be the birth mother but can include other legal guardian relationships if birth mother is not the legal guardian. Guardian Box -Mother is in reference to biological mother. If biological mother is legal guardian check “Mother” -If legal guardian is any other relation other than biological mother, mark “Other” -If other, please record relation under “Please Specify” Examples of other: adoptive parent, human services, adoption agency, grandparent, etc. Guardian Last Name and First Name: -Record the guardian’s last name followed by first name. -In the event of an adoption, please record the name of the legal guardian (adoptive parent, adoption agency, social worker etc). -Accurate identifying information is crucial for contacting the guardian in the event of an abnormal result or a need for retesting. -In the event that the infant will be held in protective services, record the name of the infant’s social worker or legal guardian. Guardian’s Birth Date -Eight digit format YYYY MM DD Gender -record guardian’s gender Phone Number -Record the guardian’s phone number (including area code) at which he/she can be most easily reached in case of emergency. -In the event that the infant will be held in protective services, record the phone number of the legal guardian or social worker. Please make sure the number provided will be answered on weekends and holidays in case of emergencies. -Accurate contact information for a guardian is important to ensure that the infant can receive follow-up testing and/or care in the event of an abnormal result in case of emergencies. Please make sure the guardian’s number provided will be answered on weekends and holidays in case of emergencies.
Health Care Provider Information
Changes• Fields for both Ordering Health Care Provider AND Primary Care Provider• Ordering Health Care Provider Number (NPI)
https://npiregistry.cms.hhs.gov/
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Currently the forms requests “Attending Health Care Provider” and the intent is to have contact information for the health care provider in order to provide follow up care if necessary. Sometimes this a “in hospital provider” such as a NICU attending and other times the patient is discharged and the program needs the PCP for the infant post discharge. We recognize that facilities also have their own requirements/needs which often include Ordering Health Care Provider for test ordering and billing purposes. In order to meet everyone’s needs we tried to clarify and add an additional provider field. Now there is a field for Ordering Health Care Provider and Primary Care Provider. If by chance they are the same provider such as the case in a clinic setting, there is no need to re-write the PCP information. You can just check the box “check if same above.” Every sample should have “Ordering Health Care Provider” information and we hope most will also have PCP information available at time of collection. Ordering Health Care Provider -Write last and first name Ordering Health Care Provider Phone Number -Provide the phone number (including area code) for the health care provider ordering the infant’s newborn screen. -This information may be used to contact the provider with abnormal test results and follow-up information. Ordering Health Care Provider National Provider Identification Number (NPI) -Provide the Ordering Health Care Provider’s National Provider Identifier number to help correctly identify the correct provider. -This information may be known by lab staff or billing staff at your facility.
The NBS program requests PCP information if known at time of collection. During education to parents about newborn screening or before the sample is collected please ask the guardian who or where they plan on taking newborn for first well check visit.
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Primary Care Provider Name -If the Primary Care Provider is the same as the Ordering Health Care Provider, check the box “check if same as above”. -If the Primary Care Provider is different from the Ordering Health care provider, please record the name of the Primary Care Provider, using last name followed by first name -If the provider is not known at the time of specimen collection, be sure to write down the name of the clinic where the guardian(s) plan to take the newborn for his or her first well child check. -Do not write the name of the provider who completed rounds on the newborn in the hospital. -Correctly recording this information is critical. The Newborn Screening Program needs the name of the primary care provider in order to make sure follow-up of abnormal results is completed. Primary Care Provider Phone Number -Provide the phone number (including area code) for the infant’s primary care provider. -This information may be used to contact the provider with abnormal test results and follow-up information.
It is possible for people to opt out of screening, though it is important that education on the importance of screening is emphasized before the decision is made. If the family still chooses to refuse screening, you need to have them sign the refusal form, and then fax or email it to the Short-Term Follow Up Staff at 1-319-384-5116 1-319-384-5116.
Contact Information• Data entry questions or corrections:
– State Hygienic Laboratory at 515-725-1630• To order forms or collection supplies:
– State Hygienic Laboratory at 515-725-1630
• Follow-up recommendations or refusals:– NBS Follow-up clinical staff at 319-384-5097 or toll free 1-
866-890-5965
• Program and Policy questions:– Kim Piper at 1-800-383-3826
