North American Registry for Care and Research in Multiple Sclerosis (NARCRMS)

Purpose

The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) is a database intended to collect longitudinal physician-reported and clinical information from people with multiple sclerosis (MS) over a long period of time and will bring together information and data collected in multiple registries and databases across the U.S. and Canada.

At your annual visits, we will collect information about a number of aspects of your MS, including a detailed neurologic examination as well as some testing that may be different from the routine visits with your neurologist. These standardized research tests will measure a variety of aspects regarding the functioning of your nervous system.

Procedures

We wish to store your medical information and potentially use it in future research. Many different kinds of research uses medical information. Some researchers may develop new tests to find diseases. Others may develop new ways to treat or even cure diseases. In the future, some of the research may help to develop new products, such as tests and drugs.

The following medical information will be collected and stored in the medical information bank:

  • Demographics: data on where you were born, your race, ethnicity
  • Medical History
  • Illicit drug and tobacco history
  • History of infectious diseases: AIDS, hepatitis
  • Results of standard of care neurological examinations
  • Immunization History
  • Medication history
  • Results of standard of care MRIs. All identifying information is removed from the images before they are uploaded into the database.
  • Results of yearly neurological and clinical examinations
  • Results of gait and mobility examinations
  • Information and data related to an exacerbation of your MS
  • Results of research assessments
  • Results of blood and urine laboratory tests

Eligibility

  • Diagnosed with MS
  • 18 - 50 years old

Please contact Victoria Hope for more information about study procedures and eligibility:

Age

N/A

Gender

Male
Female

Keywords

Multiple sclerosis, Multiple sclerosis - resources, Neurology

Principal Investigator

Augusto iravalle, MD

Department

Neurology

Contact Information

Victoria.hope@neurology.ufl.edu

352-733-2436


Be an Informed Participant

Before deciding to participate in a research study, take time to learn about clinical research, how it's conducted and your rights as a research participant. Following are some helpful resources from independent sources. Always remember that a clinical research study is research, not treatment.

Know Who to Contact

  • Eligibility: For questions about a specific study and who is eligible to participate, call or email the contact person listed for that study.
  • Your Rights: For questions about your rights as a research participant, contact the UF Institutional Review Boards at 352-273-9600.
  • Feedback: For general questions or feedback about study listings, email the UF Clinical and Translational Science Institute at CTSI-Studies-L@lists.ufl.edu.

Other Resources

  • HealthStreet: Health-focused services, classes and events, and opportunities to participate in research.
  • ResearchMatch.org: Join a national registry of volunteers willing to be contacted about research studies.

For Research Teams