NCT01353547

Brief Summary

The purpose of the research study is to identify the genetic, environmental and immune profiles that may increase a person's risk of developing multiple sclerosis (MS). While MS is not a disease caused by a single variation in genetic material (DNA), a single environmental factor, or a single malfunction in immune cells, there are genetic alterations, environmental exposures and immunologic factors that make the development of MS more likely. Obtaining information about who is at risk for MS will be beneficial in the future if the investigators can identify effective ways to prevent or slow down the progression of this disease.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
5,000

participants targeted

Target at P75+ for all trials

Timeline
175mo left

Started Oct 2017

Longer than P75 for all trials

Geographic Reach
1 country

5 active sites

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress38%
Oct 2017Oct 2040

First Submitted

Initial submission to the registry

May 11, 2011

Completed
2 days until next milestone

First Posted

Study publicly available on registry

May 13, 2011

Completed
6.4 years until next milestone

Study Start

First participant enrolled

October 1, 2017

Completed
23 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 1, 2040

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

October 1, 2040

Last Updated

May 14, 2026

Status Verified

May 1, 2026

Enrollment Period

23 years

First QC Date

May 11, 2011

Last Update Submit

May 12, 2026

Conditions

Keywords

genomic analysisonline surveysbiological specimen collection

Outcome Measures

Primary Outcomes (1)

  • Total number of subjects who are diagnosed with MS

    For each subject, weighted integrated risk score will be calculated, combining genetic burden and environmental exposure. A distribution of the risk score will be generated for the cohort. At this stage, the study will assess whether there is an increase in subjects with a diagnosis of MS (validated by a letter or copy of clinical records from the subject's neurologist) within the higher end vs. the lower end of the risk score distribution.

    20 years

Study Arms (3)

Received anti-TNFa therapy

Received anti-TNFa therapy

First-degree relative of MS patients

First-degree relative (child, parent or sibling) of a diagnosed MS patient A subgroup will be asked to undergo magnetic resonance imaging (MRI). Participants may be asked to donate a stool sample for gut flora analysis and a blood sample for ribonucleic acid (RNA) sequencing.

Referred by the Partners MS Center

Referred by the Partners MS Center

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodProbability Sample
Study Population

This large research study will ultimately enroll over 10000 subjects who are at risk of developing MS. The study will last 20 years. We will recruit subjects from all over the United States, as everything is done via mail, email, or/and phone.

You may qualify if:

  • First Degree Relatives of Patients with MS, or
  • Patients who have received anti-TNFa therapy as treatment for inflammatory diseases other than MS such as Crohn's disease, psoriasis and rheumatoid arthritis, or
  • Patients that have been referred for an evaluation of first presentation of neurologic symptoms but do not have a diagnosis of MS
  • Live in the United States

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (5)

National Institute of Neurological Disorders and Stroke

Bethesda, Maryland, 15213, United States

RECRUITING

Massachusetts General Hospital

Boston, Massachusetts, 02114, United States

TERMINATED

Brigham and Women's Hospital

Boston, Massachusetts, 02115, United States

TERMINATED

Columbia University Irving Center

New York, New York, 10032, United States

RECRUITING

University of Pittsburgh

Pittsburgh, Pennsylvania, 15213, United States

RECRUITING

Related Publications (2)

  • Laitinen AW, Tozlu C, Roostaei T, Diallo F, Onomichi K, Son J, Xia Z, De Jager PL. A Prospective Study of Individuals at Risk of Multiple Sclerosis Informs the Design of Primary Prevention Studies. Ann Clin Transl Neurol. 2026 Feb 17. doi: 10.1002/acn3.70340. Online ahead of print.

  • Xia Z, Steele SU, Bakshi A, Clarkson SR, White CC, Schindler MK, Nair G, Dewey BE, Price LR, Ohayon J, Chibnik LB, Cortese IC, De Jager PL, Reich DS. Assessment of Early Evidence of Multiple Sclerosis in a Prospective Study of Asymptomatic High-Risk Family Members. JAMA Neurol. 2017 Mar 1;74(3):293-300. doi: 10.1001/jamaneurol.2016.5056.

Biospecimen

Retention: SAMPLES WITH DNA

Saliva Sample (required), Blood Sample (optional), Stool Sample (optional) Biospecimen collection is done remotely by mailing kits to subjects. Coded samples are stored at Columbia University Medical Center (CUMC).

MeSH Terms

Conditions

Multiple Sclerosis

Condition Hierarchy (Ancestors)

Demyelinating Autoimmune Diseases, CNSAutoimmune Diseases of the Nervous SystemNervous System DiseasesDemyelinating DiseasesAutoimmune DiseasesImmune System Diseases

Study Officials

  • Zongqi Xia, MD, PhD

    University of Pittsburgh

    STUDY DIRECTOR

Central Study Contacts

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Professor of Neurology

Study Record Dates

First Submitted

May 11, 2011

First Posted

May 13, 2011

Study Start

October 1, 2017

Primary Completion (Estimated)

October 1, 2040

Study Completion (Estimated)

October 1, 2040

Last Updated

May 14, 2026

Record last verified: 2026-05

Data Sharing

IPD Sharing
Will not share

Locations