Disability Research and Dissemination Center: New Projects for 2014

Each January, the Disability Research and Dissemination Center (DRDC) issues a request for applications (RFAs) for new research opportunities. The DRDC conducts research in support of the priorities of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD). DRDC awards research grants to university and other academic and professional partners that employ medical, social and basic science, and public health approaches to these projects. To apply for any of the RFA’s, please visit www.disabilityresearchcenter.com

New RFAs for 2014 include the following (applications are due February 28):

  • RFA-NR14-01 EHDI Quality Measures – Development of Quality Measures to Facilitate Reporting of Newborn Hearing Screening and Follow-Up Data by Providers to Jurisdictional EHDI Programs
  • RFA-NR14-02 LTSAE Monitoring – Evaluating Developmental Monitoring with “Learn the Signs. Act Early.” In Child Care Settings
  • RFA-R14-001 EHDI C-Section – Birth by Cesarean Delivery and Failure on First Otoacoustic Emissions Hearing
  • RFA-R14-002 EMR Rare Conditions – Linkage of Electronic Medical Records and Administrative Databases: A Novel Tool for Surveillance and Health Services Research for Rare Conditions
  • RFA-R14-003 Healthy Weight – Validating and/or Modifying Mainstream Health Weight Interventions for People with Disabilities
  • RFA-R14-004 PLAY-MH – Project to Learn About Youth – Mental Health (PLAY – MH)

Ongoing DRDC projects

Research regarding healthy weight of people with limb differences

Obesity and unhealthy weight have become a national health prevention priority and the focus of national health initiatives. Although reports of unhealthy weight among people with disabilities are common, many people with disabilities cannot use typical scales or measurement devices. Loss of limbs and loss of muscle mass cannot be well calibrated to assure accurate height or weight measurements. Moreover, body mass index (BMI) may not be the best measurement for people with disabilities, but other instruments and strategies for evaluating weight or BMI have not been standardized for them.

Members of the Division of Human Development and Disability have been reviewing weight management and obesity for people with disabilities, individually and with national partners. The DRDC was tasked with conducting a comprehensive and systematic review of the literature starting in fall 2013. Following the literature review, DRDC will report its findings on the quality of evidence and scientific rigor used to evaluate options for gauging the healthy weight of people with disabilities. The DRDC is coordinating an expert panel meeting with division members, which will be in Atlanta this year. This national working group’s goal is to identify key areas of research and promote best practices in determining healthy and unhealthy weight in people with disability.

DRDC helps Spina Bifida Association build a national clinical care network

Spina bifida is a birth defect that results in developmental disability and complex health care needs. The Spina Bifida Association (SBA) has been supporting people with spina bifida and their families since 1973, and their website lists 133 clinical service providers and 36 chapters that offer public and professional education, information, and support on a community level.

With funding from the CDC, the DRDC began working with SBA in October 2013 to develop a national strategic plan for a Spina Bifida Association clinical care network. The goal is to enhance the lives of people with spina bifida throughout their lives. Through an oversight group made up of consumers, advocates and professionals, the DRDC will help SBA engage all constituencies supporting people with spina bifida to establish the national clinical care network (CNN). The CNN will provide organized clinical care, support and education to consumers and communities, which will be based on a comprehensive understanding of the needs of people with spina bifida and their families.