Survey and Data Management Core

The DF/HCC Survey and Data Management Core (SDMC) provides efficient, high-quality survey data collection and management services and consultation to investigators conducting population science, clinical, and health policy research.

The Core is equipped with specialized expertise, including the ability to work in community-based settings, extensive experience working with individuals from racial and ethnic minority groups, and the ability to work in clinical settings, with particular expertise in pediatrics.

The Core’s capabilities ensure that survey data collection utilizes cutting-edge methods and contemporary best practices. As a core within DF/HCC, SDMC expands the availability of comprehensive survey and data management consultation and services to DF/HCC members and fosters collaboration across institutions, disease, and research programs.

Key Services

  • Research protocol development
  • Survey question and assessment methodology
  • Questionnaire and interview guide design
  • Mail- and web-based survey development and management
  • Cognitive testing of new instruments
  • Qualitative research, including focus groups, cognitive testing, and key informant interviews
  • Customized database and process tracking systems for managing cross-sectional and longitudinal data
  • Identification of potential subjects and sample frames
  • Medical record review
  • Data entry training and oversight of project staff

Highlighted Projects

Project Title: CanSeq – DFCI/Broad/BWH Clinical Sequencing U01
Principal Investigator: 
Levi Garraway, MD, PhD (DFCI)
Description of the Project:

  • To implement and determine the feasibility of whole exome sequencing of clinical cancer patients with advanced solid tumors.
  • To develop a framework for interpreting exome sequencing data and reporting it back to oncologists, cancer patients and their families.
  • To describe the impact of whole exome sequencing data on the medical management of patients with advanced solid tumors.

Contribution of the Core:

  • Design and implementation of complex project management/participant tracking software system
  • Development and implementation of surveys and qualitative interviews
  • Data entry, management and quality assurance

Project Title: Validation of a Myelodysplasia-Specific Measure of Quality of Life – QUALMS
Principal Investigator: 
Gregory Abel, MD, MPH (DFCI)
Description of the Project:

  • Assess the validity, reliability and responsiveness of the ”Quality of Life Myelodysplasia Scale” - QUALMS-1.
  • Assess, through an observational design, whether changes in MDS treatments lead to changes in the QoL of patients with MDS as measured by the QUALMS-1.
  • Provided data management, cleaning and quality assurance

Project Title: PediQUEST Champions Formative Research
Principal Investigator:
 Joanne Wolfe, MD, MPH (DFCI)
Description of the Project:
 Use focus groups and in-depth interviews to:

  • Identify unknown barriers to effective symptom management and QoL
  • Explore the theoretical model of PediQUEST Champions

Contribution of the Core:

  • Co-developed focus group and interview instruments with PI and study team
  • Conducted focus groups and interviews with children with advanced illness, including the end-of-life period, their parents and providers, and bereaved parents whose child was cared for at DFCHCC.
  • Provided structural and thematic data coding utilizing NVivo software
  • Provided thematic analysis and final written report to PI


PUBLICATION ACKNOWLEDGEMENT:

If research supported by this core facility results in publication, please acknowledge this support by including the following in your publication(s):
"We thank Dana-Farber/Harvard Cancer Center in Boston, MA, for the use of the Survey and Data Management Core, which provided __________ service. Dana-Farber/Harvard Cancer Center is supported in part by an NCI Cancer Center Support Grant # NIH 5 P30 CA06516."