Research Database for CDKL5 Deficiency Disorder UK

• Research type

  Research Database

• IRAS ID

  296944

• Contact name

  Sam Amin

• Contact email

  sam.amin@uhbw.nhs.uk

• Research summary

  Database for CDKL5 Deficiency Disorder UK

• REC name

  North East - Newcastle & North Tyneside 1 Research Ethics Committee

• REC reference

  23/NE/0010

• Date of REC Opinion

  2 Feb 2023

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Data will be stored on the secure REDCap server and accessed only by the CDKL5 Research Team in the CDKL5 Centre of Excellence. Data will be stored indefinitely in order to enable research, data for any future trials and data to assist with finding a cure for CDKL5.

• Research programme

  The purpose of this research is to support the community affected by CDKL5 Deficiency Disorder. The charity CDKL5 UK supports this research and advocates on behalf of the CDKL5 community in the UK. Data collected by this research will help towards finding patterns, treatments and ultimately a cure for this rare disorder and therefore significantly help the community affected by CDKL5 Deficiency Disorder.

• Research database title

  Database for CDKL5 Deficiency Disorder UK

• Establishment organisation

  University Hospitals Bristol and Weston NHS Foundation Trust

• Establishment organisation address

  Bristol Royal Hospital for Children

  Upper Maudlin Street

  Bristol

  BS2 8BJ