Learning to Live with Non-Severe Haemophilia
Thank you for your interest in the Learning to Live with Non-Severe Haemophilia study. The aim of this study is to understand how living with haemophilia impacts your everyday life. The results of the study will be collected, analysed and used to write articles for medical journals which we will also share with you and the haemophilia patient community.
The study has two parts:
-
An online survey which asks you to complete the haemophilia-specific
Patient Reported Outcomes Burdens and Experiences (PROBE) questionnaire.
Clicking on the link below to complete the PROBE questionnaire will take you to the PROBE website which is based in
Canada. Your anonymous data will be analysed by the PROBE research team.
The PROBE questionnaire should take about 15 minutes to complete. As a thank you for your time in answering the
questionnaire, we would like to enter you into our prize draw – we have £50 Amazon vouchers on offer to ten people. If you would like to be entred into the prize draw please enter your email address in the consent form section below.
- We are also conducting interviews about how living with haemophilia affects everyday life. Interviews (either face-to-face or by video call) should last no more than 60 minutes. The sessions will be recorded for later analysis. Those interviewed will be offered £100 for their participation. To Volunteer for the interview section of this study please complete the form below. Your name and conatct details will be needed to arrange the interview.
How will we use information about you?
For the interview part of the study we will need to use information from you for this research project.
This information will include your
- name
- contact details
- haemophilia treatment centre
- diagnosis
People will use this information to do the research or to check your records to make sure that the research is being done properly.
People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.
We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
We will keep all information about you safe and secure.
None of your treating Physicians will have access to any of your answers.
We will write our reports in a way that no-one can work out that you took part in the study.
Once we have finished the study, we will keep some of the data so we can check the results.
What are your choices about how your information is used?
You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we have collected to that point.
Where can you find out more about how your information is used?
You can find out more about how we use your information
- at www.hra.nhs.uk/information-about-patients/
- by sending an email to simon.fletcher@ouh.nhs.uk, or kate@haemnet.com
- by ringing us on 01865 572046
- by contacting our data protection officer mike@haemnet.com.
First we’d like to check that you are happy to proceed
Consent Form
