PUBLIC USE DATASETS

Data from NPMSC, including the Pediatric Multiple Sclerosis and other Demyelinating Diseases (PeMSDD) database, constitute an important scientific resource. To enhance the public health benefit of these studies, public use datasets will be made available to qualified researchers.

NPMSC datasets will be provided only to investigators who agree to adhere to the signed research data use agreement. Dataset creation and distribution will be performed by the data coordinating center.

DEFINITIONS:

Public Use Dataset

De-identified dataset derived from the Pediatric Multiple Sclerosis and other Demyelinating Diseases (PeMSDD) database or other network projects.

Research Data Use Agreement

A formal agreement between the investigator, their institution, and the Data Coordinating & Analysis Center governing the use of the dataset.

ABOUT THE DATA:

Data Provided

The Data Coordinating & Analysis Center supplies:

  • The full dataset
  • Electronic data worksheets
  • Final study protocol
  • Data dictionary

No additional support from the DCAC or Network Investigators is provided.

HOW TO REQUEST:

Steps for Requesting:

  1. Review available public-use datasets
  2. Prepare a brief research plan
  3. Submit a formal request with your research plan to: pedms@hsc.utah.edu
  4. Sign a Research Data Use Agreement

Dataset Delivery

After requirements are met, the DCAC will provide the approved investigator with access to the requested dataset.

 

Available Study Datasets from NPMSC Research Projects:

Pediatric Multiple Sclerosis and other Demyelinating Diseases Database (PeMSDD)
  • Study Type: Registry
  • Study Period: 2010 – Ongoing
  • Enrollment: 3,000+
  • Purpose: This study, funded by the National MS Society includes patients with suspected onset of demyelinating disease of the central nervous system (CNS) prior to age 18. The purposes of the database are to describe the number and characteristics of patients with suspected early onset of demyelinating disease and to support hypothesis generation and study design development for clinical trials and observational studies to be carried out by the NPMSC. Patient data include demographics and longitudinal developmental and clinical data.