A Study to Evaluate Patient-Family Views on Pediatric MS Research Needs, Outcomes, and Methods


About this study

The primary purpose of this study is to determine patients' and families' priorities regarding clinical research studies and perceived barriers to pediatric onset multiple sclerosis (POMS) patients/family participation in research and interventional therapeutic studies.


Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

Group A - Parents or caregivers (if legal guardians) of a child or adolescent with Pediatric Onset Multiple Sclerosis.

  • Child with POMS is receiving care at one of the participating centers.
  • Child is enrolled in the Pediatric Multiple Sclerosis and other Demyelinating Diseases (PeMSDD) study.

Group B - Adolescents with POMS

  • Diagnosed POMS at a participating clinical center.
  • Currently 13 to 17 years of age (less than 18).
  • Enrolled in the PeMSDD study.

Group C - Adults with pediatric-onset multiple sclerosis

  • Diagnosed with POMS at a participating clinical center.
  • Currently receiving care at an adult clinic associated with the participating center.
  • Currently 18 to 40 years of age.

Exclusion Criteria:

  • Unwilling or unable to participate in an online or paper survey offered in either English or Spanish language.
  • Unable to reach English or Spanish language with basic proficiency.



Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Jan-Mendelt Tillema, M.D.

Closed for enrollment

Contact information:

Katie Doane M.H.A.



More information


Publications are currently not available

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