The Genetic Haemochromatosis Patient Survey 2017, a major project to collect and analyse data from patients, has just closed to new data with over 2,200 responses having been recorded.
Over the next few weeks the survey data will now be downloaded, de-duplicated and encrypted, before being anonymised and encoded. The dataset will then be used over the next few months by the society and selected researchers to generate up to date statistics about the prevalence of different symptoms and identify areas where new medical and social research may be required.
David Head, Chief Executive at the society, said “This is a very important piece of work and so we are delighted to have had so many responses from around the world. The vast majority of respondents have also provided contact details which will give us scope to go back to particular groups of patients if more questions arise or to clarify their responses. As any scientist will tell you, good quality data is key to any analysis and so this is a fantastic start to the project.
“We are also committed to keeping our members and other respondents informed about what we are doing with this valuable information, so we will be keeping the news section of our website (www.ironoverload.org.uk) updated with progress reports.”