Pey-Shan Wen, OTR/LHave You Heard of Common Data Elements?

Pey-Shan Wen, PhD, OTR/L*

Years ago, I was working in a clinic as a licensed OT with a bachelor’s degree. With limited research training I did not know how to select assessments for measuring the effect of my interventions. Most of time I used the assessments that had been used in my settings, but is this best practice? Among many assessments that measure global outcome, for example, which one should be used to assess the treatment effect? Is the Functional Independent Measure (FIM) the best option? The focus of this article is to introduce a resource for clinicians who want to select assessments for any reasons: evaluating the effect of intervention, comparing evidence with others, etc.. The large amount of existing assessments makes it difficult to select the best one that can suit your needs. It also becomes a challenge to pursue evidence-based practice when studies are conducted with different outcome measures. Knowing these challenges, the National Institute of Neurological Disorders and Stroke (NINDS) and several federal agencies developed Common Data Element (CDE) to serve as a standard for collecting data in clinical research.

What are Common Data Elements?

Common Data Elements (CDE) are sets of assessments that experts organized based on subject-specific and topic driven data -elements. The advantages of using CDE are that you can systematically collect, analyze and share information with others doing similar tasks. National Institute of Health (NIH) foresees the advantages of the usage of CDEs and encourages researchers to use CDE so that the collected data meet high quality and are comparable across multiple studies. After clinicians and researchers select a specific subject such as traumatic brain injury, and identify a specific topic such as Global Outcome, a list of high quality assessments will be available for use.

 How to start

A summary table on the NIH website (http:// lists the links of CDE homepages. If you are interested in Neurological Disorder, NINDS is probably the best website is (http:// default.aspx#page=Default). From there, you can choose specific subject such as Spinal Cord Injury, Multiple Scoliosis, Parkinson’s, Stroke and TBI.

Here is a demonstration of using TBI as a subject. Since the NINDS has organized CDE to four major types of studies (sub-disease) for TBI: Epidemiology, Acute hospitalized patients, Moderate to severe TBI, and Mild/concussion TBI, the subject of the CDEs can be narrowed down by choosing one of four sub-diseases. Then you can search for the domains that you intend to measure and find the assessments listed under the domains. Some assessments are available by clicking the link of Case Report Form; some assessments are available through the other websites that are posted under the link. For example, under the domain “Global Outcomes” six assessments are listed such as Disability Rating Scale, Glasgow Coma Scale, Mayo-Portland Adaptability Inventory-4, etc.. The “File/Link” takes you to the copyright information, where you can find the forms to use. The “CDEs” link shows you the details of the instruments including codes of items, questions, rating scales, references, etc.. If you already have the domains in mind, you may go directly to the domains and make a decision on which assessments to use after reading the copyright, description and psychometrics of the assessments. If you do not know what domains are important to your subject, the listed domains can serve as a guideline for you to make a decision.

While we all tried to be evidence-based occupational therapists, it is important to practice with strong and consistent evidence that is generated based on different settings and studies. We as occupational therapists not only need to stay ahead on updated interventions but also be aware of the updated assessments to evaluate the evidence of the interventions. Our interventions are advancing overtime so are the outcome measures. The NIH is promoting CDE and makes many of these assessments online and free to use. Meanwhile, assessments are evolving from paper and pencil format to computer adaptive testing that can drastically reduce the length of time required to complete assessments for easy adaptation to clinical use. Many de-identified records are becoming available online for people with similar interest to access and study. All these efforts help generate comparable and strong evidence for evidence-based practice. Next time when you are wondering about what assessments to use, check out the CDE.


  • Common Data Element (CDE) Resource Portal. Retrieved June 16, 2015, from cde/

  • NINDS Common Data Elements Harmonizing information. Streamlining research. Retrieved June 16, 2015, from http:// default.aspx#page=Default

  • Whyte, J., Vasterling, J., & Manley, G. T. (2010). Common data elements for research on traumatic brain injury and psychological health: current status and future development. Archives of physical medicine and rehabilitation, 91(11), 1692-1696.

    *Note about the author: Dr. Pey-Shan Wen is the FOTA Research SIS Chair and is Assistant Professor at Florida International University. See her contact information on the FOTA website if you have any questions about this article.


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