CCL Haemato-Oncology Database
Research type
Research Database
IRAS ID
312855
Contact name
Linda Little
Contact email
Duration of Study in the UK
years, months, days
Research summary
CCL Haemato-Oncology Database
REC name
South West - Frenchay Research Ethics Committee
REC reference
22/SW/0069
Date of REC Opinion
4 Jul 2022
REC opinion
Further Information Unfavourable Opinion
Data collection arrangements
Data entry is via dedicated screens, with drop down menus, and options to enter letters or numbers, and minimal free text entry. Linked to patient Unique Identifier Number, date of birth and gender, as well as the referral pathway are entered for new patients. Diagnosis is selected from a drop down menu; further options allow for disease staging.\nTreatment courses are entered by start date unto the treatment screen, linked to a toxicities screen, date of terminating each regimen, with reason (such as toxicity or disease progression). ECOG Performance scores are entered at the start of treatment regimens. A separate screen logs Outcomes such as Loss to Follow-up or Date of Death.\nAn interface allows wide-ranging pathology results feed in real time into the database. Assessment test results screens encompass histopathology, immunophenotyping, cytogenetics, molecular markers for example, and dedicated Imaging screens. Data sources include patient notes and electronic records, electronic treatment prescribing, electronic reporting of imaging and tests results. Specialist tests undertaken at external centres are reported and emailed directly via NHS email to the clinical team. All manual data entry is undertaken efficiently by members of the clinical team or data managers who have a specialist clinical background. \n
Research programme
The collection of local data enhances the delivery of safe and effective patient centred care to our Haemato-oncology patients, facilitating;\n•\tEvaluation of the practice through regular audits, which are presented and discussed at the MDT; for example we can look at toxicity of treatments eg effects on renal function in a group of patients on a particular therapy. We can also review survival outcomes for patients on treatment through Kaplan Meier Survival curves.\n•\tSpecially designed database software allows us to map key results through treatment in graphical form, in the clinic setting, for clinical decision making, and through illustration, with the patients.\n•\tData downloads have allowed the team to contribute to presenting & publishing Posters, Abstracts and Articles at local and international meetings, thereby contributing to better understanding of the delivery of care in this group of patients in a wider setting. \n•\tWe are preparing to partake in Real World Evidence Data studies as part of the Honeur (Haematology Outcomes Network in Europe) program, set up by Janssen to increase understanding and knowledge of blood cancers, and to improve outcomes for patients. A substantial proportion of real-world patients are not eligible for clinical trials, driving differences in outcomes.\n
Research database title
CCL Haemato-Oncology Database
Establishment organisation
Cancer Centre London
Establishment organisation address
49 Parkside
London
SW19 5NB