STARS: Synapse NeurodevelopmenT TrAckeR ESNEFT

• Research type

  Research Database

• IRAS ID

  303847

• Contact name

  Ben Marlow

• Contact email

  benjamin.marlow@esneft.nhs.uk

• Research summary

  STARS: Synapse NeurodevelopmenT TrAckeR ESNEFT

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  24/NE/0128

• Date of REC Opinion

  15 Jul 2024

• REC opinion

  Favourable Opinion

• Data collection arrangements

  Data are self-reported by parents of children with neurodisability. Data will be collected on:
  • Basic information; gender, date of birth, contact details and NHS number (to link/check data)
  • Health portal data:
  o Childs neurodisability information/diagnosis
  o Communication
  o Mobility
  o Genetic testing (whether they have had genetic testing, and the findings)
  o Sleep
  o Sensory processing
  o Hypoglycaemia symptoms
  o Gastrointestinal
  o Diet
  o Seizures
  o Learning impairment
  o Migraines

  Data will be collected via a STARs registry (which is maintained by Amplitude)

• Research programme

  Children with a neurodiverse diagnosis

• Research database title

  STARS: Synapse NeurodevelopmenT TrAckeR ESNEFT

• Establishment organisation

  East Suffolk and North Essex NHS Foundation Trust

• Establishment organisation address

  Colchester Hospital

  Turner road

  Colchester

  CO4 5JL