Research is important in order to understand how diseases work which helps guide how to diagnose and care for patients and to develop treatments.
How do I take part in PNH research?
Taking part in research is a personal choice and may also depend on whether you are eligible to take part in a particular research study.
There are clinical trials taking place in the United Kingdom for treatments for PNH. To find out what clinical trials are taking place in which you may be eligible to take part:
- speak to your haematologist or Clinical Nurse Specialist at the PNH National Service you can
- look up clinical trials which are currently recruiting patients in the UK on the PNH Global Alliance Trial Finder by typing “UK” into the search box
- look up the international Clinical Trials Register and in the search box, type “PNH” into “Condition or disease” and your country and city into the “Country” and “City” boxes.
- This is a register of all interventional (where someone is given treatment or a new kind of care) clinical trials on medicines conducted in the European Union or the European Economic Area which started after 1 May 2004. There is now a map of clinical trials in Europe which can be found here.
Alternatively you could agree to take part in the new IPIG PNH Registry which is described below:
IPIG PNH Registry
If you have been diagnosed with paroxysmal nocturnal haemoglobinuria (PNH), you may be invited by your treating specialist to participate in the new International PNH Interest Group (IPIG) PNH Registry. Check out our IPIG PNH Registry page for more information.
Patient involvement in PNH Research
In England and Wales, when health research is funded by the taxpayer (and also most research funded research by large charities) it is mandatory for people affected by a condition to be involved in the design and delivery of research about the condition. Please note that this is different from taking part in the research as a patient being studied. If you would like to get involved in having a say in the design of research about PNH please express your interest to your PNH team.
An example of PNH Support assisting to design and analyse the results of PNH research is this burden of illness study of patients in France, Germany and the UK where patient advocates from the UK and Germany reviewed the questions to be asked in the study and their results as well as helped to write the scientific paper with the results.
