Before you take part in a research study, it is important to know more about its benefits and risks for you and whether it will have any impact on your health or privacy. If they have not already given you the information, ask the research project team more about the study, including about their credentials and experience. You might also find it useful to discuss the research project with someone independent of the study, eg a member of your Haemophilia Centre team or your Haemophilia Foundation or your GP.
These are some questions that might be useful to find out more about research studies:
What is the research study about?
Why are you researching this?
How will this help me or other people with bleeding disorders?
What will happen to me during the research study?
What are the advantages and disadvantages/benefits and risks of taking part in the study?
With tests or treatments, are there any possible side-effects?
What will happen to me after the study?
What happens with the results? How will I find out about the results? Will the results be published or given to anyone else?
How will you protect my privacy? What sort of personal information will you collect? What will you do with it? Who will see it?
What happens if I want to withdraw from the study before it is finished or before the information is published?
If you have concerns about a research project, you can make a complaint.
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