# The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet): Component D-Data Coordinating Center

> **NIH ALLCDC U01** · RESEARCH TRIANGLE INSTITUTE · 2020 · $249,693

## Abstract

PROJECT SUMMARY/ABSTRACT
The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) consists of six sites,
throughout the United States, that perform longitudinal, population-based surveillance of multiple muscular
dystrophies to better understand their public health and clinical impacts. In 2014, RTI International and the
University of North Carolina, with the collaboration of the North Carolina Department of Health and Human
Services Division of Public Health, were funded to establish a new MD STARnet surveillance project in North
Carolina's Piedmont (central) region. In the next funding cycle, we propose to continue as a site and serve
as MD STARnet's Data Coordinating Center (DCC) to provide expert leadership and support of data
collection, quality assurance and quality control (QA/QC), data pooling, and data access. RTI will ensure the
highest levels of data security, ease of data access, and increased scientific productivity throughout MD
STARnet by increasing the productivity and data quality of medical records abstraction (Aim 1); creating a
new internal website for greater data security, utility, and user-friendliness (Aim 2); producing data
management dashboards to provide real-time tracking of every stage in the surveillance process (Aim 3);
enhancing MD STARnet's scientific productivity by standardizing data fields, QA/QC procedures, manuscript
boilerplate, and other data procedures (Aim 4); and providing a smooth, rapid transition from the current
DCC with expert data archive and transfer, agile design of data entry tools, and in-person or remote training
(Aim 5).

## Key facts

- **NIH application ID:** 9990618
- **Project number:** 5U01DD001254-02
- **Recipient organization:** RESEARCH TRIANGLE INSTITUTE
- **Principal Investigator:** Stephen W. Erickson
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $249,693
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9990618

## Citation

> US National Institutes of Health, RePORTER application 9990618, The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet): Component D-Data Coordinating Center (5U01DD001254-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9990618. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*