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The NARCOMS Registry is a project of the Consortium of Multiple Sclerosis Centers. 

© NARCOMS 2017 ​

NARCOMS facilitates MS research, by offering the registry as a resource for collaborators and conducting and publishing research based on registry data.

Providers

As a health care provider to people living with MS, you can help us get the word out about NARCOMS.  

 

Please use the form below to let us know if you need brochures for your clinic!

We provide assistance for researchers wanting to:

  • recruit patients with MS for research studies

  • access de-identified NARCOMS data

  • collect data not previously captured in NARCOMS

Researchers

Process Summary

  • Complete the Researcher Information Form (prior to submission of a letter of intent for research grants)

  • NARCOMS will contact the researcher to discuss the project

    • Review the project aims with the researcher

    • Determine whether NARCOMS data would be helpful or project feasibility

  • The project will be reviewed by the NARCOMS team. Comments/revisions may be requested.

  • The review process generally takes about 3-4 weeks. 
     

After Approval
 

  • Documentation of IRB approval is required.

  • The necessary agreements (i.e. contract) will be reviewed and signed.

  • Prepare a time line for the project.

  • Work with the NARCOMS team to prepare all printed or online material (e.g. letters, survey instruments, protocols, etc.)

  • Publication Review of manuscripts by NARCOMS is required for appropriate citations and use of data.

Information NARCOMS Collects

 

Through initial enrollment surveys and updates, we collect demographics, functionality, co-morbidities, providers, therapies and symptom progression. 

Enrollment:

  • Demographics (race, education, age, etc.)

  • Disease History (diagnosis, relapses, initial symptoms)

  • Functionality

  • Other Health Conditions

  • Providers

  • Therapies (past and current)

Updates:

  • Demographics (insurance, employment, disability, etc.)

  • Functionality

  • Quality of Life

  • Other Conditions

  • Providers

  • Relapse and Symptom Progression

  • Therapies (current)

  • Patient awareness of certain experimental therapies and alternative medicine

Please contact msregistry@narcoms.org for more information about the Patient-determined Disease Steps (PDDS)

Recruitment Assistance

 

If you are interested in recruitment assistance, please fill out the information form and a member of the NARCOMS research staff will contact you.  

 

  • For IRB approved clinical trials and observational studies

  • Mail and/or e-mail notifications sent to participants by the NARCOMS team

    • Mailing includes: NARCOMS cover letter, study specific information sheet, contact phone number and email or reply envelope

  • Target population based on study criteria

    • Examples of criteria which can be used:

      • Location (i.e. State, Zip Code)

      • Disability or specific Performance Scale status

      • Medications taking

Data Access and Collection
 

There are 2 ways NARCOMS can provide data to researchers. NARCOMS should be contacted prior to submission of a Letter of Intent for research grants. If NARCOMS is not contacted prior to submission, NARCOMS reserves the right to decline review of the proposal. The Researcher Information Form will need to be completed for initial review of either of the methods listed below:


 

Data Analysis:

  • De-identified datasets to answer specific research questions or NARCOMS team will conduct data analyses on research questions or requested topics in collaboration with researchers.

  • Project is reviewed and approved by NARCOMS

  • Preliminary inquiries for feasibility or funding purposes can be done in advance

  • Data is de-identified and delivered securely.

  • Can only be used for stated purposes.

  • Manuscript review by NARCOMS before publication

Data Collection:

  • For more detailed or in depth questions to participants (not regularly asked in biannual NARCOMS Update).

  • Either as a separate survey or part of our biannual questionnaire (length restrictions apply).

  • Sent via mail or online survey

  • Study must be IRB approved

  • No marketing contacts allowed (e.g. selling walking aides, assistive devices, etc.)