The UK National Registry of Chronic Myeloid Leukaemia (CML)
Research type
Research Database
IRAS ID
288895
Contact name
Jane F Apperley
Contact email
Research summary
The UK National Registry of Chronic Myeloid Leukaemia (CML)
REC name
North West - Haydock Research Ethics Committee
REC reference
20/NW/0409
Date of REC Opinion
7 Dec 2020
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Each site will identify CML patients within
their hospital Trust and after informed consent has been taken (the date of which will be stored in the system), the
initial data collection process can take place via the web based interface. The data will be stored on a secure server at
The Royal Liverpool University Hospital Trust. The IT department in the Royal Liverpool University Hospital NHS Trust will have full back end
access to all data to ensure that all security measures are not breached.Research programme
The NCRI CML group set up a series of annual CML patient/carer open days in 2002. These have evolved into annual meetings which tour the country, and are led by the active patient group CMLsupport.org. Several national CML experts regularly contribute to these, including the applicant. The notion of extending data collection to include the paediatric population, pregnancy outcomes and treatment stopping data has been welcomed by cmlsupport.org. It is envisaged to continue to involve that group in the work, and to present findings at their future meetings.
Research database title
The UK National Registry of Chronic Myeloid Leukaemia (CML)
Establishment organisation
Royal Liverpool University Hospital Trust
Establishment organisation address
Department of Haematology
Prescot St
LIVERPOOL
L7 8XP