Just How Important is the Patient Perspective?

5 Ways iConquerMS Members Have Recently Made an Impact

People with MS and their caregivers have a wealth of information to contribute to MS research, gained from their experience living with the disease. iConquerMS is a powerful resource to gather these important data for this purpose. The voice of the MS community (heard through iConquerMS) has facilitated a number of advancements toward better treatments and a cure recently.

  1. How Do We Find a Cure For MS? As part of the National MS Society’s three-year strategic plan, the Pathways to Cures initiative identifies three pathways to a cure: Stop disease activity, Restore function by reversing damage and symptoms, and End MS by preventing new cases. Input from iConquerMS members has helped to ensure the initiative is informed and influenced by the perspectives of people affected by MS.
  2. Getting Back What’s Been Lost A survey of network participants shows the three key pathways resonate with people living with MS, with Restore being ranked most important (especially to those with more advanced MS, living with a higher level of disability).
  3. What Does a Cure Mean to You? Responses from the iConquerMS community centered on freedom from the They painted a picture of a life free from the constraints of MS and indicated they are eager to get back to activities their symptoms have kept them from.
  4. Developing New Therapies With You in Mind As part of a recent collaboration with EMD Serono, iConquerMS members provided valuable input into the design of the clinical trial for evobrutinib (a new therapy for MS).
  5. Big Changes Ahead! The growing consensus to include patient input is moving like a ripple effect throughout the drug development industry. Things that are important to people living with the disease, such as the impact of symptoms on daily life or the way information is presented on drug labels, are being brought to the forefront in product development and evaluation.