Jenny Kelly, a masters student at the University of Calgary is starting a project entitled

 “Multiple Sclerosis Patients and Computer-Mediated Communication: Illness Narratives and the CCSVI Treatment”. She is looking for participants to fill out a questionnaire that will be sent and returned by email. A description of her project and what is being asked of participants is below.

Direct-MS endorses this project and we hope there will be lots of participants. The results may help to educate the wilfully blind neurologists about what is happening in the real world.

Title of Project:

Multiple Sclerosis Patients and Computer-Mediated Communication: Illness Narratives and the CCSVI Treatment

Jenny Kelly M.A. Student, Faculty of Arts, Department of Sociology, Telephone: (403) 620-8921, email: jekelly@ucalgary.ca

Supervisor:

Dr. Ariel Ducey, Department of Sociology

Sponsor:

Canadian Institute of Health Research (CIHR) Master’s Award

 The University of Calgary Conjoint Faculties Research Ethics Board has approved this research study.

Purpose of the Study:

The purpose of this study and your participation is to examine how access to information posted online has impacted the perceptions of people living with MS of the disease, CCSVI and CCSVI treatment. You have been asked to participant because you have accessed online forums that provide information about CCSVI and its treatment. Your participation will help to provide insight into how the information posted online by fellow individuals with MS is impacting choices regarding health treatments. To partake in this study, you must have been diagnosed with MS and you must be of the age of majority, 18 years or older.

What Will I Be Asked To Do?

Upon agreeing to participate in my study, you will be asked to fill out an interview guide regarding your experience with MS and how the information found online has impacted your perception of MS, CCSVI and CCSVI treatment. The interview guide contains five sections that you will be asked to fill out in as much detail as possible and should take approximately 1 ½ to 2 hours to complete. You may contact me via email if you have any questions or concerns about the interview guide, and if you will permit me to do so, I would like to have the option of contacting you (within two months of your submission of the interview guide) to seek clarification or elaboration of your answers if necessary. You may choose not to answer certain questions and you may withdraw from this study at anytime (see below).

To participate in this study, you are required to fill in the interview guide and return it to me via email, mail or fax. By returning the completed interview guide, you are providing consent to participate in this study.

What Type of Personal Information Will Be Collected?

If you agree to participate, you will be asked to provide your age, gender, and city of residence, in addition to details about your symptoms of MS and how long you have lived with MS. No other personal identifying information will be collected, and all information collected shall remain confidential. Furthermore, identifying characteristics such as your name, or other identifying details that might be included in your answers, will be removed from descriptions used within my written thesis. All participants will be referred to using a pseudonym in written reports or publications based on this research.

Are there Risks or Benefits if I Participate?

There are no foreseeable risks to your participation in this study. There are no direct benefits to your participation in this study. I hope this research on how people living with MS use information online in relation to CCSVI and its treatment will be the basis for a greater understanding between people with MS and those who treat and research the disease.

If you provide any information that has the potential to cause harm to yourself, or others, it is my legal obligation to reveal this information to law enforcement or other agencies.

What Happens to the Information I Provide?

Participation in the study is completely voluntary and confidential. You can withdraw from the study at any time. If you choose to withdraw from the study after data collection has began, the information that you have provided until your withdrawal date may be used in the study if it is deemed relevant. The main use of the data I will collect will be for my master’s project. The only individuals that will have access to the information you provide on the interview guide will be my supervisor, Ariel Ducey (Associate Professor, Sociology, University of Calgary), and myself. There will be no names on the interview guide and all respondents will be referred to using a pseudonym. The interview guides will be kept on a password-protected computer that only my supervisor and I will have access to. After three years, all identifying information, such as names and contact information will be disposed of (and removed from the interview guide you submit), but I will store the interview guide responses indefinitely as it may be helpful in future research.

Questions/Concerns

If you have any further questions or want clarification regarding this research and/or your participation, please contact:

Ms. Jenny Kelly,

Department of Sociology in the Faculty of Arts

(403) 620-8921, email: jekelly@ucalgary.ca

Dr. Ariel Ducey, Department of Sociology (403) 220-5054, email: aducey@ucalgary.ca