Guidelines, updates and practice reminders

New Newborn Metabolic Screening Programme Data App is now live – Supporting Timely, High Quality Newborn Screening

Health New Zealand | Te Whatu Ora is pleased to announce the launch of a new data app for the Newborn Metabolic Screening Programme (NMSP).

This tool is designed to support health professionals, districts, and quality improvement teams with timely, actionable data to enhance newborn screening outcomes.

What’s new?

The app provides monthly and quarterly data for three key indicators:

• Collection Time – the age at which blood spot samples are collected
• Transit Time – how long it takes for samples to reach the laboratory
• Coverage – the proportion of newborns who complete metabolic screening

This replaces the previous transit time app and includes enhanced features such as: 

• Interactive graphs and maps
• Hover-over data points
• Downloadable datasets
• Clear visual trends over time

Why it matters

Timely collection and delivery of blood spot samples are critical to early diagnosis and treatment of over 20 rare but serious conditions screened through the Newborn Metabolic Screening Programme.

The app enables districts and providers to:

• Monitor performance in near real-time
• Identify trends and areas for improvement
• Support equity-focused actions
• Coordinate quality improvement initiatives

Please note: The data presented in the Newborn Metabolic Screening Programme Data App may differ from figures in the annual monitoring report. This is due to differences in data sources, methodologies, and reporting timeframes. The app provides a more current snapshot to support ongoing monitoring and quality improvement, while the annual report offers a comprehensive, validated overview for official reporting.

Access the App

The app is open access and does not require a login.

Newborn Metabolic Screening Programme App (external link)

The old transit time app will be archived as the transit time data has been transferred to the new app.

Need Support?

If you need support to navigate the app a user guide and video, are available in the Support section on the Introduction tab of the app or you can reach out via the email below for assistance with using the app or interpreting the data.

If you have questions, feedback, or would like to view data by facility, please contact the Antenatal and Childhood Screening team at antenatalnewbornscreening@tewhatuora.govt.nz. 

Over the King’s Birthday and Matariki long weekends, courier services will not be operating on the public holiday days: Monday 2 June and Friday 20 June.

This creates risks for delays in getting samples to the laboratory, potentially delayed results, diagnosis and treatment, which may result in poor health outcomes or possibly death. 

We are running express courier collections over the King’s Birthday and Matariki long weekends with a limited number of facilities that have an average of at least one birth per day:

• Christchurch Women’s Hospital
• Palmerston North Hospital
• Waitakere Hospital
• Gisborne Hospital
• Queen Mary Maternity
• Whanganui Hospital
• Hawkes Bay Health
• Rotorua Hospital
• Wellington Hospital
• Hutt Hospital Maternity
• Southland Hospital
• Whakatane (Ko Matariki) Hospital
• Kurawaka Waipapa Maternity
• Taranaki Base Hospital
• Tauranga Hospital
• Masterton Hospital
• Nelson Hospital
• Timaru Hospital
• Whangarei Hospital
• Wairau Hospital

If midwives/LMCs would like newborn bloodspot cards to be included in any of these facilities' express couriers over these long weekends, they will need to arrange to get them to the facility in time for their courier collection. Please check with these facilities for the express courier collection times. Normal courier services will operate Tuesday 3rd June and Monday 23rd June.

If you are unable to drop samples at one of the above facilities during King’s Birthday and Matariki weekends, please remember to: 

• Collect the newborn blood spot samples from 24 hours of baby’s age and while babies are still in the hospital or birth facility if possible.
• Ensure it is couriered as soon as possible once dry (changed from bright red to brown, usually just a few hours). 

Facilities: If samples are collected in a facility that is not on the above list, and you are unable to drop samples at one of the above facilities:

• King's Birthday: As there will be no courier pick up on Monday 2 June, please ensure samples are sent via courier on Tuesday 3 June. If possible, arrange an earlier courier pick-up time for Tuesday 3 June.
• Matariki: There will also be no courier pick up for Friday 20 June, so please ensure samples are sent via courier on Monday 23 June.

At home: If samples are collected at home and you are unable to drop samples at one of the above facilities:

• King's Birthday: A courier should be arranged for Tuesday 3 June by calling 0800 268 743 on Tuesday morning. Alternatively, you can book courier pick-ups online.
  Book a pickup online — NZ Post (external link) 
• Matariki: A courier should be arranged for Monday 23 June by calling 0800 268 743 on Monday morning. Alternatively, you can book courier pick-ups online.
  Book a pickup online — NZ Post (external link)

Samples can be dropped at the closest facility.

Samples in CourierPost envelopes can be dropped off at Post Shops.

Screening for spinal muscular atrophy (SMA) will start from 12 February 2025. All bloodspot samples that reach the screening laboratory (LabPLUS) on and after 12th February 2025 will be screened for SMA.

Please see Screening for spinal muscular atrophy (SMA) for more information on SMA.  

The Newborn Metabolic Screening Programme: Guidelines for Health Practitioners (NMSP) have been updated. These are available above.

Please discard all previous versions of the guidelines.

Screening for spinal muscular atrophy (SMA) is expected to start early 2025. Exact timeframes are still being worked through and this information will be updated when a start date has been set. 

Please see Screening for spinal muscular atrophy (SMA) for more information. (external link)

Changes

• The newborn blood spot samples should now be taken from 24 hours of baby’s age.
• The optimal time for newborn blood spot collection is between 24 and 48 hours of baby’s age and should be before 72 hours. This is a change from between 48 and 72 hours of baby’s age.
• It is recommended that blood spot samples be collected while babies are still in the hospital or birth facility if possible.
• The earlier collection will help ensure early diagnosis and can prevent irreversible damage and life-threatening illnesses cause by delay in access to treatment.
• Monitoring of the samples that have already been collected from 24 hours indicated that there is no impact on the quality of samples collected from at 24 hours. This will continue to be monitored.

Practice reminders

• Please ensure all relevant staff are aware of who is responsible for blood spot sample collection especially when babies are inpatients and this is documented clearly and understood by all.  
• Please ensure the date/time of sampling is recorded on all blood spot cards.
• Send each blood spot sample when collected and dried – don’t hold onto samples to send them in batches.
• Continue to collect samples from 24 hours of age and send to the laboratory regardless of any upcoming public holidays.
• Record the courier tracking number before blood spot sample cards are sent to the laboratory. Take a photo or note down the number from the courier bag and add this to the baby’s health care records.
• Expect to receive a result in 7–10 days of the sample being taken, if not, check that the laboratory has the sample using the courier tracking number and call 0800 LabPLUS (0800 522 7587) to enquire about the sample/result. Remember to let the parents/guardian know the results.
• Record the test result in the baby’s clinical notes.
• There is a great best practice e-learning module available at LearnOnline Best Practice - Newborn Metabolic Blood Spot Collection. (external link)
• Resources: lancets, cards and courier bags can be ordered, free of charge, via newbornscreeningresources@adhb.govt.nz
• NMSP information resources for both midwives and whanau are available at Newborn Metabolic Screening publications.
• When whānau/parents/guardians decline, if appropriate, please ask them if they agree to a blood spot card being filled out with their demographic information, for the purposes of monitoring participation in the programme. If they consent, fill the sample card in as much as possible including a note that screening was declined, and courier it to the laboratory.
• Results are no longer being sent by fax, so please contact the laboratory ASAP to update your preferred contact details. Fill out the form on medialab.com (external link) and email to LabLink@adhb.govt.nz

An example of the importance of the timing of collection and transit

• Every day counts to making a difference for baby with newborn screening. Here is one example of why delays in collecting and sending blood spot samples can have serious consequences:
  • Congenital adrenal hyperplasia (CAH) is just one of the serious illnesses that can be detected by newborn screens. Babies with CAH who are detected through newborn screening in the first week of life usually have minimal symptoms - they might be starting to spill and have mild electrolyte disturbance but are otherwise well babies. The same disease picked up at 2–3 weeks old can look completely different, with babies that are extremely unwell. They can be dehydrated, well below their birth weight, with little urine output and a very low or unmeasurable BP. The electrolyte disturbance - low sodium, high potassium - can be very severe and immediately life-threatening. Some babies with CAH that is picked up late will be so sick they need admission to ICU and might be left with life-long disability. Remember, every day counts with newborn screening.