Newborn Screening Ontario (NSO)

Data Definition: Home Phone Number

Data Definition: Indicate Sex of the baby on visual exam

Data Definition: These are disorders (i.e. diseases) that are targeted by the newborn screening program. The values are the names or abbreviations of the target disorders.

Data Definition: Whether infant was premature or not as recorded by NSO requisition

Data Definition: Age of Infant at time of NSO Sample Collection in hours. This is derived from the infant's date and time of birth and the date and time of newborn screen collection

Data Definition: NSO Submitter Fax

Data Definition: Date and time the sample was punched for each assay (AAAC, TSH, 17OHP, Hb, IRT, CFTR, GALT/Bio, SUAC, steroid profiling, etc)

Data Definition: Time measurement is entered into LIS from instrument for each panel of tests set at an assay level (AAAC, TSH, 17OHP, Hb, IRT, CFTR, GALT/Bio, SUAC, steroid profiling, etc)

Data Definition: Date and time the result was accepted at an assay level (AAAC, TSH, 17OHP, Hb, IRT, CFTR, GALT/Bio, SUAC, steroid profiling, etc)

Data Definition: Lab staff who accepted the assay (AAAC, TSH, 17OHP, Hgb, IRT, CFTR, GALT/Bio, SUAC, steroid profiling, etc)

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Data Definition: The unit of measurement for each analyte(for example umol/L)

Data Definition: Unique number linked to test ID and result flag

Data Definition: The date that the dried blood spot sample was received by Newborn Screening Ontario

Data Definition: Indication that the infant had a postnatal transfusion with packed red blood cells as recorded on the newborn screening requisition

Data Definition: Enter the date infant received one or more transfusion of packed red blood cells in your unit. If multiple transfusions occurred over different days, enter the date of the latest transfusion.

Data Definition: Date parents or HCP informed of the screen positive result

Data Definition: How the infant's blood was applied to the newborn screening filter paper

Data Definition: What additive, if any, was mixed with the infant's blood prior to application to the newborn screening filter paper

Data Definition: City of practice location of the infant's HCP after discharge as indicated on the newborn screening requisition

Data Definition: Postal code of the infant's HCP after discharge as indicated on the newborn screening requisition

Data Definition: Concentration value of each measurement of an analyte or ratio. Almost all of these are all numerical - i.e. the concentration of the particular analyte in the dried blood spot. Exceptions: Hemoglobin: the result is a pattern enumerator which is a string field corresponding to an "HPLC pattern". Cystic Fibrosis (CFTR mutation analysis): the result is numerical corresponding to the number of mutations found

Data Definition: Concentration value rounded to number of decimal points specified or text describing HGB pattern Exceptions Hemoglobin: the results is an "HPLC pattern" which is a text field Cystic Fibrosis: the results are string fields with mutation abbreviations corresponding to the "Mutation" column in the CFTR assay in SG Result Viewer

Data Definition: Normal range of the analyte or ratio in the dried blood sample.

Data Definition: The Numeric Unsatisfactory code

Data Definition: Was a phone call from NSO to the submitter required to collect demographics necessary for sample interpretation

Data Definition: Has diagnostic evaluation been initiated

Data Definition: NSO Submitter Phone

Data Definition: NSO Submitter City

Data Definition: NSO Submitter Province

Data Definition: NSO Submitter Postal Code

Data Definition: Newborn's family name

Data Definition: Newborn Name - Given Name 1

Data Definition: Infant date of birth (day/month/year).

Data Definition: Newborn Ontario Health Insurance Plan (OHIP) Number without version code.

Data Definition: Location where the birth occurred (hospital, home, other, etc.).

Data Definition: Time when infant is born (24 hour clock).

Data Definition: Infant birth weight (grams).

Data Definition: Infant's gestational age at the time of birth calculated using "Estimated Date of Birth" and "Newborn Date of Birth" data elements in weeks and days.

Data Definition: Health Care Provider requesting NSO(Newborn Screen).

Data Definition: The phone number of the health care provider ordering the newborn screen.

Data Definition: First name of the infant's HCP after discharge as indicated on the newborn screening requisition

Data Definition: Last name of the infant's HCP after discharge as indicated on the newborn screening requisition

Data Definition: Phone number of the infant's HCP after discharge as indicated on the newborn screening requisition

Data Definition: NSO Analytes and Ratios. These are things that are measured in the dried blood spot, and will have values (numerical or text) and result codes associated with them.

Data Definition: The Newborn Screening Ontario accession number of the initial sample. If NSO has received more than one sample on an infant and the samples have been linked in the NSO system, the accession number of the first sample received by Newborn Screening Ontario will appear in this field

Data Definition: Date of collection of Newborn Screening Ontario (NSO) sample

Data Definition: Time of collection of Newborn Screening Ontario (NSO) sample

Data Definition: Name of the Regional Treatment Centre newborn screen positive infant was referred to for diagnostic evaluation

Data Definition: Street address of Health Care Provider submitting NSO sample.

Data Definition: Name of NSO Submitting Facility

Data Definition: NSO Submitter Street Address

Data Definition: Name and designation of Physician providing referral to Regional Treatment Centre for follow up of screen positive result.

Data Definition: Unique NSO identifier assigned at the time of NSO Accessioning.

Data Definition: Form number on Newborn screening blood spot filter paper

Data Definition: Whether the newborn screening sample was a capillary sample or a venous sample

Data Definition: The reason why a dried blood spot received by Newborn Screening Ontario is considered unsatisfactory for testing

Data Definition: The area of the peak for a specific hemoglobin variant

Data Definition: The variant of the hemoglobin detected in the newborn dried blood spot

Data Definition: Infant feeding as indicated on newborn screen requisition

Data Definition: These result codes only exist for Amino Acids and Acylcarnitines assay (AAAC) analytes. Result code in the following possible formats - Analytes and Ratios: XXX-I-Norm, XXX-I-Elev, XXX-I-Decr, etc… (note: C5OH is an analyte, C5OH(D) is a disorder)

Data Definition: NSO Valid Result

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Data Definition: A unique number assigned to the infant and / or the infant’s dried blood spot by the submitting institution / health care provider and recorded on the newborn screening requisition

Data Definition: Date/Time the newborn screening referral package was generated

Data Definition: The city where the health care provider / submitting facility involved in the care of the child is located

Data Definition: The name of the health care provider / submitting facility involved in the care of the child

Data Definition: The postal code of the health care provider / submitting facility involved in the care of the child

Data Definition: The telephone number of the health care provider / submitting facility involved in the care of the child

Data Definition: The province where the health care provider / submitting facility involved in the care of the child is located

Data Definition: The street address of the health care provider / submitting facility involved in the care of the child

Data Definition: Indicates the type of health care provider or health care facility involved in the care of the infant

Data Definition: The name of the health care provider who has requested an infant's hemoglobinopathy carrier results from NSO

Data Definition: The name of the coroner involved in the case of a deceased infant for whom post mortem bile and/or blood samples have been submitted to NSO.

Data Definition: The name of the pathologist who submitted a post mortem bile and/or blood sample on a deceased infant.

Data Definition: Indicates the analytical results from newborn screening. See definitions for concentration value and rounded concentration value for more detailed definition.

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Data Definition: The date that the letter was printed by Newborn Screening Ontario

Data Definition: Indicates the type of letter generated by Newborn Screening Ontario. Letter types include mailers, risk letters, referral packages, repeat request letters, parent repeat request letters, transfusion letters, HCP transfusion letters, hemoglobinopathy carrier letters, etc

Data Definition: Maternal Ontario Health Insurance Plan (OHIP) Number without version code as indicated on the newborn screening requisition. Other Number Type when OHIP is not available (for example, RAMQ)

Data Definition: Maternal Name - Family Name as indicated on the newborn screening requisition.

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Data Definition: Newborn Ontario Health Insurance Plan (OHIP) Number without version code.

Data Definition: The time (24 hour clock) when baby is born as indicated on the newborn screening requisition

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Data Definition: MOH Specified Hospital Number

Data Definition: Indicates the birth order of each baby (Twin A= first born, Twin B=second born), irrespective of live birth or still birth.

Data Definition: The name of the hospital where the birth occurred if Birth Location =hospital. Includes all Ontario hospitals with and without birthing units and some out of province and out of country hospitals.