Hairy cell leukaemia patient registry and clinical database
Research type
Research Database
Full title
Hairy cell leukaemia patient registry and clinical database
IRAS ID
109657
Contact name
Claire Dearden
Contact email
Research summary
Hairy cell leukaemia patient registry and clinical database
REC name
London - South East Research Ethics Committee
REC reference
13/LO/0329
Date of REC Opinion
25 Mar 2013
REC opinion
Favourable Opinion
Data collection arrangements
Patients with hairy cell leukaemia, or its variant forms, who have given informed consent, will have their previously-collected data entered into the Patient Registry and Clinical Database, in de-identified form. The data will consist of baseline diagnostic data, to confirm the correct diagnosis, data documenting the baseline patient and disease characteristics, clinical symptoms related to the disease, the physical examination, treatment management and complications. Follow-up to record the outcome of therapy, its complications if any and the results of all treatments given over time will be recorded after subsequent follow-up visits. It is also proposed to transfer de-identified data into this database from a historical database held at the RMH/ICR (RMH/ICR CCR approval no. CCR3151, 8th Oct 2008) in order that answers to questions concerning long-term outcomes may be available in the immediate future.
Research programme
Hairy cell leukaemia is a rare disease and an international database is therefore required in order to collect sufficient patient data to answer a variety of research questions. This clinical registry is being created under the auspices of the International Hairy Cell Leukemia Consortium (www.hairycell.org). The physicians involved in managing this disease worldwide have agreed to collaborate in addressing the many unanswered questions affecting patients. There is uniform commitment to maintain complete anonymity for the patients while working together to gather reliable information to improve the management of this disease. The RMH/ICR will be the lead centre for this study in the UK.
Research database title
Hairy cell leukaemia patient registry and clinical database
Establishment organisation
The Royal Marsden Hospital and the Institute of Cancer Research
Establishment organisation address
15 Cotswold Road
Sutton
UK
SM2 5NG