The Haemochromatosis Society is pleased to announce the launch of a major survey of people diagnosed with genetic haemochromatosis and people who have been identified as having the faulty genes which can cause haemochromatosis (iron overload).
Patients in the UK and beyond are invited to complete The Haemochromatosis Society 2017 Patient Survey, which is the first major project to collect data from patients since 2004 and the most comprehensive and wide ranging patient survey ever run.
David Head, Chief Executive at The Haemochromatosis Society, said “We know there are so many unanswered questions about haemochromatosis. About symptoms, links to other conditions, treatment pathways, genetics, and lots more. We intend that this is the start of trying to address some of those issues and to tackle some of the unknowns.
“So we are encouraging as many people as possible to complete the survey. I would ask everyone who is affected, or who has the genetic mutations that can cause iron overload, to help us.
“The survey is very important, and is also very comprehensive, covering lots of symptoms and questions about peoples’ experiences of the condition. For this reason patients should make an hour or more available to go through all the questions and think about their own symptoms.”
The link to the survey is at the foot of this page.
Questions about the survey
Why are you doing this?
We are completing the survey to answer lots of questions about the prevalence and seriousness of symptoms, peoples’ experience of treatment, links to other conditions, and more. This was last done in 2004 and that was a much less wide ranging survey. The results of the survey will influence the work of the charity and may influence the direction of medical research.
Will I see the results?
Yes, we will publish a report about the survey in late 2017 or early 2018.
Is my data secure?
Yes. When the data is downloaded contact details and medical details will be separated and encrypted. We do not share data anywhere else without your explicit consent.
Who can complete the survey?
There is no limit to the number, but we want at least 1,000 patients to help us. These can be people who are affected by iron overload, or who have the faulty gene(s) that cause iron overload, even if not currently loading. Patients should complete the survey even if they have no symptoms. The survey is not restricted to the UK, you can complete the survey from anywhere in the world.
How long will it take?
About an hour
Can I take a break?
Yes. We recommend that you simply leave the survey open and connected, there is no time limit. However, if your computer has cookies enabled you will be able to return if you do navigate away.
What will I need?
You will need to set aside an hour or so, and to avoid being interrupted. Ideally you will have your blood test results to hand. You’ll need to have time and be willing to think hard about the questions and not feel rushed. You will need a good internet connection.
Can I complete the survey off-line?
Not at present. We are unsure whether this will be made available and we urge patients to complete the survey online.
Do I have to give my personal details?
These are optional questions, but would be very helpful.
Must I answer every question?
Some questions must be answered, but these do not include personal contact data. Usually a “prefer not to answer” option is included.
What if the answer options don’t include my own situation?
Please use your judgement and select the option that is closest to your own situation. We realise that not every possible combination of factors can be covered in a questionnaire like this.
How do I start the survey?
By clicking on the big red button below, or on this link: https://www.surveymonkey.co.uk/r/2VRKZN7