We would like to announce news of a very important initiative in which we hope to develop appropriate services in response to current vCJD issues within the Haemophilia population. In order to achieve this, The Haemophilia Society wishes to undertake a vCJD survey in the very near future and will be asking you to participate.With your help, this survey will have a major impact on the services you receive in regard to vCJD.
The Haemophilia Society and Hertfordshire University are working in collaboration on a survey investigating people’s attitudes towards the issues surrounding vCJD.
Attitudes towards tests and living in the high risk category for vCJD for people with bleeding disorders has not yet been investigated, therefore, this survey has been designed to address this.The study will examine different aspects of the experiences around vCJD, including beliefs, behaviours, attitudes and feelings.
The results of the study will be reported to The Department of Health, The Haemophilia Society AGM and at various conferences related to infectious diseases and blood policy.
More importantly, the results will also be reported in medical journals, and will be used to develop better services to support people who have been informed by the HPA they are at public health high risk for vCJD. Further to this, the results will enable recommendations to haemophilia centres and other service providers. The results will therefore have a major impact on people’s lives and the services they receive.
Taking part in the study will not affect your medical treatment in any way, and the study is separate from the work of the Haemophilia Centres where you receive medical care.That means we will not be able to intervene in individual cases to deal with any problems that people report, but we hope that the study will lead to better services in the future for all people with bleeding disorders.
All the information you provide in the study will be treated as strictly confidential and will only be used for the purposes of this study, and no one outside the research team will have access to them.Individuals will not be identified in any of the reports of the research.
You don’t have to join the study. You are free to decide not to take part or to withdraw at any time.However, we hope you will be able to participate, in which case all you need to do is to complete the questionnaire when your receive it and return it to the Haemophilia Society in the envelope provided.If you would like any further information about the study, please don’t hesitate to contact Georgina Robinson on 0800 018 6068.
