The CFSPID Registry - Version1.0

• Research type

  Research Database

• IRAS ID

  273158

• Contact name

  Rebecca Cosgriff

• Contact email

  rebecca.cosgriff@cysticfibrosis.org.uk

• Research summary

  UK Cystic Fibrosis Screen Positive Inconclusive Diagnosis (CFSPID) child and sibling study

• REC name

  South West - Central Bristol Research Ethics Committee

• REC reference

  21/SW/0021

• Date of REC Opinion

  3 Jun 2021

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Data are collected via NHS clinical teams, through a secure online portal managed by a company with NHS Data Security and Protection Toolkit certification. Data are stored on secure Microsoft Azure servers.

• Research programme

  Families affected by a CFSPID diagnosis, through research carried out by clinical teams and epidemiologists.

• Research database title

  UK Cystic Fibrosis Screen Positive Inconclusive Diagnosis (CFSPID) child and sibling study

• Establishment organisation

  Cystic Fibrosis Trust

• Establishment organisation address

  1 Aldgate

  London

  EC3N1RE