# The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component E - Enhanced Abstractor

> **NIH ALLCDC U01** · CENTER OF ENVIRONMENTAL HEALTH · 2021 · $80,000

## Abstract

Project Abstract
 Medical records continue to be an important source of information for epidemiological studies, clinical
databases, clinical research and audits. They are often considered the gold standard for identifying morbidity,
co-morbidity, treatment, and past medical history in health service research. Retrospective review is a valid
approach for data collection but must be based on several assumptions about the validity of the data, which
include: a) that the needed data will be present in the record; (b) the data in the record will be in a form that
can be abstracted or manipulated; c) the data will accurately represent what was, in fact, the case; d) that data
addressing any single item will be consistently recorded by one or more individuals who enter the medical
data; and e) that medical record entries will be interpreted in a manner common to all those who have access
the medical record. The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) has
been conducting retrospective medical record review and data abstraction since it first started surveillance
activities in 2002.
 The main source documents for this effort were physician and consultative notes, DNA diagnostic
reports, admission and discharge reports, and other clinical and administrative documentation. As the project
grew and additional research questions were asked, data collection became even more complex because this
project is a multi-site collaboration and each sites’ health care systems and medical record platforms come in
various shapes and sizes with data found in multiple locations. The potential for inter-rater variability is a
concern when data is to be abstracted by more than one individual. Abstractor training and data quality must
be a key component of the process and inter-rater reliability must be assessed at multiple points. New York
(NY) has participated as an MD STARnet core site. The current Abstractor training and quality program, led by
the NY site, has been fully integrated into the core project. The NY site has the tools, the knowledge and the
ability to oversee abstractor training and quality assurance/quality control.

## Key facts

- **NIH application ID:** 10220801
- **Project number:** 5U01DD001251-03
- **Recipient organization:** CENTER OF ENVIRONMENTAL HEALTH
- **Principal Investigator:** Aida Soim
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2021
- **Award amount:** $80,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10220801

## Citation

> US National Institutes of Health, RePORTER application 10220801, The Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) Component E - Enhanced Abstractor (5U01DD001251-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10220801. Licensed CC0.

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