Clinical trials are useful for understanding diseases and how to treat them. However, these trials often focus on products and therapies, overlooking the most important part of the study: people. Trial registries that follow people over a long period of time paint a more accurate picture of how people are affected by a specific condition in the real world and how lifestyle, the environment, and socioeconomic factors impact the course of the disease. These registries can be useful in following long-term, complex diseases, like multiple sclerosis (MS). The MS-LINK Outcomes Study offers a registry for people living with MS.
The MS-LINK Outcomes Study is a patient-focused registry that seeks to gather information to help make healthcare advancements for the benefit of people with MS. Participants in the MS-LINK Outcomes Study will share information about their demographics, MS history, treatments, and respond to monthly surveys about their symptoms and management. They will also allow their neurologist to share information contained in the medical records about their MS-related visits, lab and MRI results, and care plan. The information collected will be de-identified so that individual privacy is respected. By capturing a large amount of patient-centered data while using data-sharing technology, we will better understand the effects that MS and MS treatments truly have on people’s lives.
We plan to enroll 200 participants at UT Health Austin during the three-year period of this study.
- Adults aged >18 years of age diagnosed with MS, treated and untreated, by MS Centers in the US and Canada
- Willing and able to provide written informed consent
- Willing to be contacted for recruitment into sub-studies that may be relevant to them
- Willing and able to complete monthly surveys and document events of interest (e.g., MRI, relapse, hospitalization, and ER/urgent care visits) as they occur
- Willing to participate in additional follow up (no additional visits outside of routine care required) at the site for at least three years
- Unable to complete questionnaires in English
- Unable to consistently access the Internet
- Patients participating in clinical drug trials at the time of study enrollment
Clinical Trial Information
The MS-LINK Outcomes Study at the University of Texas at Austin
Location: UT Health Austin, MS and Neuroimmunology Center
Dell Medical School
Local site principal investigator: Leorah Freeman, MD, PhD
Research coordinators: Helen Onuorah, BA; Avery Largent, BA
Contact: US Medical Information, 888-275-7376, eMediUSA@emdserono.com; Communication Center, +49 6151 72 5200, firstname.lastname@example.org