The development of an App to support and inform parents after receiving a positive result from the newborn screening programme for metabolic disease.

Receiving the news that your child may have an inherited metabolic disorder is a frightening and bewildering experience.   This guide is designed to provide useful background information about the newborn screening process that may have raised this concern and the offer some explanation of these rare but important conditions from a parental perspective.    The information provided is from authoritative sources and provides the parent with an understanding of the condition and its treatment and describes the way in which the family will be supported while further testing takes place and on-going care begins if the baby is confirmed to have the disorder.

The newborn screening process is designed to identify children at an early stage and prevent harm by timely and effective treatment.   The parents themselves rapidly become expert at managing their child if a disorder is identified and this short guide, supported by video content from experienced parents who have gained practical experience, is designed to build understanding and confidence when caring for a new baby.

It should also be a valuable resource not just for the parents but also for the wider family and friends who may wish to understand more about these disorders and support the family.

It contains important information about professional and parent based organisations who may be able to offer support and further information.   It is designed to complement the care being offered by your doctor and other health professionals who will help you look after and enjoy your new baby.

The aim of the project:

  • To design, develop and publish the App – completed
  • To evaluate the App in conjunction with Parents and Health professionals – Target date November 2019
  • Refine and update the App in light of the evaluation – Target date January 2020