CCL Haem-Oncology Database
Research type
Research Database
IRAS ID
321212
Contact name
Linda Little
Contact email
Research summary
CCL Haem-Oncology Database
REC name
North West - Haydock Research Ethics Committee
REC reference
22/NW/0360
Date of REC Opinion
5 Jan 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The data to be stored includes:
Haemato-oncology patients' unique hospital number, date of birth and gender, their diagnosis and stage of disease.
Relevant disease markers and test results at diagnosis, and through their treatment monitoring. These includes imaging, pathology tests and specialist test results including bone marrow biopsy results, cytogenetic, immunology and molecular markers.
Treatments for the disease including chemotherapy, immunotherapy, novel agents, and supportive medicines.
Side effects of treatment are included by treatment course, by grade of the toxicity.
Patient performance status is recorded using a recognised scoring system, at the beginning of each new treatment.
The date of death, or loss to follow-up.The data collections arrangements:
Over 90% of the data feeds in automatically through interfacing with our pathology systems, other data elements are entered in real time from the clinic setting, by specialists including clinical nurse specialist, and a data manager with an oncology nursing background.
The source of data is accessed directly from clinical reports, electronic reports, and electronic prescribing.
Access to the database is password protected, and open to a small number of specialist clinical and data management staff connected with this project, and the dedicated IT support specialist.Research programme
The Haem-Oncology Database is intended to support patients diagnosed with haematological malignancies, both within our practice, and throughout a wider national and international patient community. We audit our results and outcomes through downloading and querying relevant data from the data base, to produce audit reports. These are used to monitor our practice in relation to accepted parameters, and where necessary to carry our improvements. We feed back results and outcomes at clinical multidisciplinary meetings through presenting audit reports, and to patients within the clinic settings. We contribute Real World Data from the database to relevant haematological malignancies' research, with the aim of improving the treatment outcomes and experience of this patient group; and in turn to improve survival outcomes and quality of life experience for this group. Most heamato-oncology patients are unsuitable for clinical trials. The aim of real world data research is to present the experience of patients undergoing treatment outside the clinical trials setting; to reflect how they respond to and tolerate treatment, and to reflect how trail outcomes compare to and transfer to the real world setting. This research is part of a tightly controlled environment to ensure that any planned studies are discussed and approved by the relevant database committee, and undertaken where strictly relevant anonymised data is shared. Studies are shared with relevant teams, published in specialist journals, and presented at haematological meetings
Research database title
CCL Haem-Oncology Database
Establishment organisation
Cancer Centre London
Establishment organisation address
49 Parkside
London
SW19 5NB