Title: Psychological well-being among those who are at risk from, or who have tested positive for Huntington’s Disease (HD)
Researchers: Maria Dale, John Maltby
Purpose of data collection: To help improve support provided for families with HD
1. Proposed aim: The current study seeks to explore psychological well-being among those who are at risk of, or who have tested positive for HD.
2. Detailed methodology You will be asked a number of questions relating to demographics and history of the disease within the family. You will also complete a number of questionnaires (about 70 items) regarding your psychological well-being, and concerns about HD.
3. Confidentiality and anonymity The responses you give will not be personally identifiable in any reports published from this research study. Each participant will be anonymised and data will be presented as overall themes from the entire sample.
4. Consideration. There is an important key point to raise with you before you participate. We will ask you some questions that relate to HD. It would be understandable if you found them upsetting, therefore if you think you might be likely to feel any significant discomfort or stress as a result of being asked questions about HD, please DO NOT take part in the study. If you do decide to take part, but then decide to withdraw, you are free to do so. Furthermore, please note that even if you are happy to proceed, that this may raise issues for you. If taking part in the survey has raised any issues or questions then you should perhaps, in the first instance, contact your General Practitioner for any advice. Contained within the website where you have found this survey there is support and advice around Huntington's Disease At no point will you be identifiable from your answers. The answers to the questions will not be used to make any individual assessments. It is important to remember that if you do decide to take part in the survey, but then decide to withdraw, you should feel no compulsion to continue the survey.
There is one additional thing we want you to do. This is so you are able to withdraw your data at a later date if you wish. We need to develop a system so we are able to identify your data. For this reason there is a space provided in the survey in which you are asked to issue yourself with your own Personal Identification Number (PIN). Therefore, if you wish to withdraw from the research at a later date you can use this number to identify your data and we can remove it from the survey.
I understand that my participation is voluntary and that I may withdraw from the research at any time until April 2018 without giving any reason. I understand that to do this during the survey I can exit the Survey Software by just shutting down the Window when completing the survey. I understand that to withdraw after I have completed the survey, I can contact Dr John Maltby on firstname.lastname@example.org stating my Personal Identification Number. My data are to be held confidentially by the named researchers. Any contact regarding consent at a later date will be kept separately from my data in a locked cabinet for up to a period of five years. After this the information will be deleted using the University of Leicester's Waste Management Team's procedures for destroying confidential material. My data, which will be in electronic form, will be downloaded from the electronic survey system when the data collecting part of the study has been completed. This will become coded data. At this point I understand that the only identifier to the data that exists is the Personal Identification Number that I created in the survey so I am able to withdraw at a later stage. In accordance with the requirements of some scientific journals and organisations, I understand that the coded data will be kept in electronic form for up to five years. After this time they will be deleted using the University of Leicester's Waste Management Team's procedures for destroying confidential material on digital storage media. In accordance with the requirements of some scientific journals and organisations, I understand that my coded data may be shared with other competent researchers. I understand that my coded data may also be used in other related studies. The overall findings may be submitted for publication in a scientific journal, or presented at scientific conferences. This study will take approximately 1 year to complete. I will be able to obtain general information about the results of this research by giving the researcher my email address now as detailed below. I am giving my consent for data to be used for the outlined purposes of the present study. All questions I have about the research have been satisfactorily answered. I agree to participate.