BLISS: Blood Cancer Long-term follow-up using Integrated healthcare SystemS data

Description

The BLISS Project

The BLISS project will link the data from the 10 myeloma clinical trials (detailed below) with healthcare systems data to make sure it is accurate and can be used for future research.

•Myeloma X •MUKOne •MUKFour •MUKSix •MUKEight •Myeloma XI •MUKThree •MUK Five •MUKSeven •MUKTwelve

The BLISS platform will help to answer important research questions including:

 

  • whether treatments have had a long-term benefit
  • how frailty is assessed
  • how bone disease is treated
  • if trials represent all patients who get blood cancers

 

Healthcare Systems Data

The NHS collects data about patients as part of normal day-to-day running of healthcare services (e.g. hospital appointments and admissions, and the reasons for these). Some of this is coded and made available to researchers through a central process. This is called ‘Healthcare Systems Data’.  We will also use it to answer important research questions including whether treatments have had a long-term benefit, how frailty is assessed, how bone disease is treated and if trials represent all patients who get myeloma

Data Linkage

At the time of recruitment for the trials listed we did not ask for consent for linkage to data held by national data providers (such as NHS England). We have permission from the Health Research Authority, on the advice of the Confidentiality Advisory Group (CAG), to obtain follow-up information. This involves sharing a limited amount of personal data (NHS Number, date of birth and sex) with NHS England to obtain linked Healthcare Systems Data.

You can find out more about the CAG from
https://www.hra.nhs.uk/about-us/committees-and-services/confidentiality-advisory-group/

If you or a family member took part in one of the listed trials and would like to know more, or wish to opt out of the data linkage, please visit the BLISS website at https://ctru.leeds.ac.uk/bliss/

Project website

https://ctru.leeds.ac.uk/bliss/