MS Focus Group
Through its Focus Group, the INI MS Center provides support to MS patients and their families.
Another option for MS Patients is participation in the Patient-Led Multiple Sclerosis Research Community
The Patient-Led Multiple Sclerosis Research Community is a volunteer group made up of MS patients, caregivers, researchers, clinicians, and other stakeholders. This group was chartered in September 2015 and is the result of a Patient Centered Outcomes Institute (PCORI) Tier 1 award received by the Center for Outcomes Research at the University of Illinois College Of Medicine at Peoria (UICOMP). Together patients and caregivers, researchers at UICOMP and OSF Saint Francis Medical Center, clinicians at the Illinois Neurological Institute MS Center, and other stakeholders are partnering to drive the MS research agenda forward in Central Illinois.
If you are interested in joining this group or would like to be put in contact with someone to find out more information, please call Marie McWhirter at UICOMP--309-671-8454.
What is PCORI?
- Stands for Patient Centered Outcome Research Institute
- An independent, nonprofit, nongovernmental organization authorized by Congress in 2010.
- Funds research that involves a partnership between patients and other stakeholders throughout the research process.
- Seeks answers to real-world questions brought about from patients.
How do I become a group member?
- Call Marie McWhirter at the Center For Outcomes Research located at the University Of Illinois College of Medicine at Peoria 309-671-8454.
What is my commitment if I become a group member?
- This is a volunteer group. Members may join or leave at any time, and attendance at meetings is not required to considered part of the community.
- Share your experiences, expertise, and insight to support the group in driving the research agenda forward.
- Recognize that MS affects the life of each person differently and value each person’s perspective.
- Even if you are unable to meet in person, we still want you to participate if you are interested. You can offer your input by telephone, email, mail, etc.
How Often does the group meet?
- Quarterly meetings will be arranged.
- Sessions will be recorded if you are unable to attend in person.
- Quarterly Newsletters will sent out.
What happens at the meetings:
- Progress on the MS Research agenda is provided.
- Opportunity for open discussion.
- Presentation by an expert on a MS topic or treatment.
- Any other MS topic or idea can be discussed.
- This is a patient-led group so patients and caregivers will help develop the group into what their needs/requests are.