The BLISS Project
The BLISS project is funded by Blood Cancer UK.
The BLISS project will link the data from 10 myeloma clinical trials with healthcare systems data to make sure it is accurate and can be used for future research.
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.
The BLISS project will link the data from myeloma clinical trials with healthcare systems data to assess long-term outcomes and check the validity and usefulness of using healthcare systems data to monitor clinical trial outcomes.
Clinical Trials
Clinical trials are the best way to show potential benefits and harms of new treatments. Blood cancer clinical trials usually run for several years to collect data on new treatments and patient outcomes.
Usually, clinical trial data is collected using individual forms and databases set-up for that trial. This approach takes time for NHS staff to enter data and sometimes we can only follow-up with patients for a limited time for practical reasons.
Healthcare systems data
The NHS collects a lot of data in patients’ electronic health records and some of this is coded and made available to researchers through a central process. These data are called ‘healthcare systems data’.
As healthcare systems data are already collected, there is potential to use it instead of gathering the same data but in a different way for each trial. It is important to check that healthcare systems data is suitable for clinical trials. This work has not been done before for blood cancer clinical trials.
Study aims
Healthcare systems data will be linked to existing blood cancer clinical trial datasets in the BLISS database.
We will use linked data to assess further long-term outcomes and check the validity and usefulness of using healthcare systems data to monitor clinical trial outcomes including whether patients are still alive, if they have been diagnosed with another cancer, what treatments they have had and if they have been admitted to hospital for infections, bone fractures or heart disease.
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
- if trials represent all patients who get blood cancers
Trials included
This data linkage study will include participants who were part of the following clinical trials:
| Myeloma X | MUKFive |
| Myeloma XI | MUKSix |
| MUKOne | MUKSeven |
| MUKThree | MUKEight |
| MUKFour | MUKTwelve |