Survey on the Lives of Haemophilia Patients, Part Two

ČSH

You may still remember filling out the questionnaire titled "How Czech Haemophilia Patients Live" in 2011. Since exactly five years have passed since then, it is time to find out where things have moved, what has changed, and how life is now. That is why the society has prepared a follow-up survey. The vast majority of questions are repeated to allow precise comparison of developments. However, some new ones have been added, because back then there was no discussion about extended half-life products, gene therapy, or pharmacokinetics, for example. This in itself reflects the progress, and the survey aims to capture it.

The results, which at the time also attracted interest from the European Haemophilia Consortium and some neighbouring countries, will serve to evaluate quality of life, set further goals, and generally help the haemophilia community itself in many ways.

The first questionnaires were distributed to participants at the "Together on Haemophilia" meeting in Čestlice, and more are available at all centres. There, they are placed in labelled and stamped envelopes, so all you need to do is fill them out and drop the envelope in a postbox. If they have not yet arrived at your centre, please let the society know through the usual contacts so the situation can be resolved. For many, a more convenient option is to respond online using the form published on the internet at https://goo.gl/forms/j0KjP6Zgv8ItECgs1.

The society, the survey sponsor Shire, and statistics experts have devoted considerable time, effort, and finances to the preparation. It is therefore in everyone's interest to take advantage of the opportunity and actually fill out the questionnaire. Truly everyone should do so, after all, it is about them. It goes without saying that the entire matter is completely anonymous, and no identifying information about respondents is collected anywhere.