SO-LIFE
Research type
Research Study
Full title
Study Of - LIving with a platelet Function disordEr (the SO-LIFE study)
IRAS ID
185310
Contact name
Kate Khair
Contact email
Sponsor organisation
Haemnet
Duration of Study in the UK
0 years, 2 months, 31 days
Research summary
Platelet function disorders are a rare group of usually inherited abnormalities that impair the process of blood clotting and thus result in bleeding. With approximately 1500 people diagnosed and registered in the UK they are often misunderstood and poorly treated. Among this group of diagnosed patients only about 130 were treated in 2011/12.
Platelet disorders range from those that result in mild bleeding to very rare conditions that cause major life-threatening bleeding. They may affect people of all ages. In childhood, they commonly cause nose and mouth bleeding as well as bruising from minor trauma. In older girls and women these disorders may result in heavy periods, which can have a major impact on quality of life and may impact on fertility and reproductive choices.
We plan to hold four regional focus groups at which we will give participants two questionnaires to complete, this will take about 15 minutes. After this we will hold tape recorded group interviews asking about the questionnaires and what day-to-day life with a platelet function defect is like. This is the main aim of the study.
REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
15/WM/0310
Date of REC Opinion
28 Oct 2015
REC opinion
Further Information Favourable Opinion