A data set for the design and implementation of the upper limb disability registry

If the data elements needed for patient registries are not identified, designing and implementing them can be very challenging. Identifying and introducing a Data Set (DS) can help solve this challenge. The aim of this study was to identify and present a DS for the design and implementation of the upper limb disability registry.

This cross-sectional study was conducted in two phases. In the first phase, to identify the administrative and clinical data elements required for registry, a comprehensive study was conducted in PubMed, Web of Science, and Scopus databases. Then, the necessary data elements were extracted from the studies and a questionnaire was designed based on them. In the second phase, in order to confirm the DS, the questionnaire was distributed to 20 orthopedic, physical medicine and rehabilitation physicians and physiotherapists during a two-round Delphi. In order to analyze the data, the frequency and mean score of each data element were calculated. Data elements that received an agreement more than 75% in the first or two-round Delphi were considered for the final DS.

A total of 81 data elements in five categories of "demographic data", "clinical presentation", "past medical history", "psychological issues", and "pharmacological and non-pharmacological treatments" were extracted from the studies. Finally, 78 data elements were approved by experts as essential data elements for designing a patient registry for upper limb disabilities.

In this study, the data elements necessary for the design and implementation of the upper limb disability registry were suggested. This DS can help registry designers and health data administrators know what data needs to be included in the registry system in order to have a successful design and implementation. Moreover, this standardized DS can be effective for integrating and improving the information management of people with upper limb disabilities and used to accurately gather the upper limb disabilities data for research and policymaking purposes.