A Study on Self-Management in MS
Posted - 03 Sep 2015
Circulating on behalf of Dr. Setareh Ghahari, (Assistant Professor, School of Rehabilitation Therapy, Queen’s University) who is conducting a study on self-management in MS. She is seeking both adults with a confirmed diagnosis of MS or MS healthcare professionals, researchers or policy makers. All pertinent information is below and attached.
You are invited to participate in a study to develop a measure for self-management skills in people with MS. Self-management is ‘the ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes involved in living with a chronic condition’.
You are eligible to participate in this study if:
1) you are over the age of 18 with a confirmed diagnosis of MS; or
2) you are a healthcare professional, researcher or policy maker with expertise and at least 2 years experience of working in the field of MS.
If you agree to participate, you will complete an online or paper questionnaire, which includes items that will potentially be included in the Manage MS measure. We ask that you provide feedback based on your expert opinion on how well each item captures the skills and behaviours necessary for a person with MS to manage their life and roles. The survey will need to be completed within 15 days of receipt in order for the researchers to modify the items and send the survey to you again for another round of feedback. It is estimated that this will be repeated up to a maximum of 2-3 times. It is estimated that completing the survey in each round would take approximately 30 minutes of your time. Please see the file attached for more information on the study.
If you are interested in participating or you have any questions in regards to the study, please contact:
Dr. Setareh Ghahari, Assistant Professor, Queen’s University
Click here for the Information_Sheet_and_Consent_Form_-_Delphi_survey.pdf
NARCOMS MS Research Effort Seeks Participants: MS Registry Enables Researchers to Find Solutions for People with MS
Article Date - 15 Mar 2015
Please see the article above regarding a survey for the North American Research Committee on Multiple Sclerosis (NARCOMS). NARCOMS is a global registry for Multiple Sclerosis (MS) research, treatment, and patient education. Their research program allows people with MS to expedite the research by volunteering information about one’s own experiences with MS.
There has been a good response to this survey, and consequently Dorothyanne has had to order more paper copies. If you would like a paper copy mailed to your home, here it is link through which you can directly request a form: http://www.narcoms.org/paperformrequest.
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