Patient Views on Immune Thrombocytopenia (ITP) and Research Studies
Research type
Research Study
Full title
Understanding Patient Perspectives on Immune Thrombocytopenia (ITP) and Research Studies
IRAS ID
211991
Contact name
Becky Ward
Contact email
Sponsor organisation
Imperial College London and Imperial College Healthcare NHS Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Immune Thrombocytopenia (ITP) is a disease characterised by immune-mediated platelet destruction, resulting in low platelets (<100 × 109/L) and an increased risk of bleeding. ITP is diagnosed by means of exclusion, so it is likely that it encompasses several different diseases. This explains the huge variability amongst patients (e.g. likelihood of bleeding, platelet counts and treatment responses). In addition, the cause of ITP is still unknown. There is a clear need for further research into ITP and for the development of new treatments with fewer side effects.
This is a unique questionnaire study designed to demonstrate the impact that ITP has on patients’ lives, as well as to determine their views on the need for further research. Very few studies ask these questions from the patients’ perspective. The 3 main aims are to: (i) understand the physical and emotional impact of ITP from the patient perspective, with a particular focus on fatigue; (ii) identify patient views on disease causality and exacerbation; and (iii) understand patient views on research, including factors that may affect willingness to participate in a study.
Patients will be recruited over a period of 6 months whilst waiting for their Outpatient Haematology appointment at Hammersmith Hospital. The recruitment target is 80. The inclusion criteria are patients over 18 who have a clinical diagnosis of ITP, and are willing and able to complete a questionnaire.
This questionnaire will be used as a pilot study to provide greater evidence towards the development of future studies aimed at improving the management of ITP patients and their treatment options. This study is supported and funded by The ITP Support Association.
REC name
London - West London & GTAC Research Ethics Committee
REC reference
17/LO/0252
Date of REC Opinion
27 Feb 2017
REC opinion
Unfavourable Opinion