The ConNeCT study is a UK based study, approved by the NIHR, aiming to improve our understanding of complications involving the brain and nervous system in TTP. The results of the study will help to inform better management of the neurological complications of TTP.
TTP patients have been involved in designing this study led by The Royal Liverpool University hospital from the outset. When asked what TTP research was important to them, patients raised this as an area where they felt more knowledge was needed to improve care.
The study includes not only patients with a new diagnosis of TTP, but also patients who have been diagnosed with TTP and are undergoing follow-up. The study is questionnaire based and ask questions about memory, concentration, mood and quality of life. Questionnaires can be completed by patients and healthy volunteers (non-blood relatives, friends or carers of patients – as a comparison) at 6-12 monthly intervals over a period of approx. 2 years.
Any hospitals treating patients with TTP in England, Scotland or Wales can participate in the study once the necessary approvals are in place. The study is simple to set up, take part in and does not require any extra visits to hospital or blood tests.
If you are a patient with TTP and you are interested in getting involved, please speak to your local TTP Consultant/Team and ask them to contact Dr Tina Dutt and Dr Rebecca Shaw for further information.
