Questasy: Documenting and Disseminating Longitudinal Data Online Using DDI 3

Abstract

This paper is part of a series that focuses on DDI usage and how the metadata specification should be applied in a variety of settings by a variety of organizations and individuals. Support for this working paper series was provided by the authors' home institutions; by GESISLeibniz Institute for the Social Sciences; by Schloss Dagstuhl -Leibniz Center for Informatics; and by the DDI Alliance. B Y A L E R K A M I N W I T H M I C H E L L E E D W A R D S , O L I V E R H O P T , J A N N I K J E N S E N , D A N K R I S T I A N S E N , O L O F O L S S O N A N D J O A C H I M W A C K E R O W ABSTRACTQuestasy is a Web application developed to manage the dissemination of data and metadata for panel surveys. It was primarily developed for the LISS Data Archive, but was designed to be repurposed for other surveys. The structure of the application, from the underlying database to the generated Web pages, is based on DDI 3. This paper describes how Questasy was designed and implemented.

The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: Scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts

“…Data will be made available through Questacy (DDI 3.x XML) and can be accessed by our website (www.profilesregistry.nl). 38 In order to arrange optimal long-term data warehousing and dissemination, we follow the quality guidelines that are formulated in the 'Data Seal of Approval' (www.datasealofapproval.org) document, developed by Data Archiving and Networked Services. In short, this means that (1) the data can be found on the internet; (2) research data are accessible (while taking into account ruling legislation with regard to personal information and intellectual property of the data);…”

Persistent symptoms of fatigue, neuropathy and role‐functioning impairment among indolent non‐Hodgkin lymphoma survivors: A longitudinal PROFILES registry study

“…Since 2011, the PROFILES registry data are freely available according to the FAIR (Findable, Accessible, Interoperable, Reusable) data principles for non‐commercial (international) scientific research, subject only to privacy and confidentiality restrictions. Data are made available through Questacy (DDI 3.x XML) 57 and can be accessed through our website (http://www.profilesregistry.nl). In order to arrange optimal long‐term data warehousing and dissemination, we follow the quality guidelines that are formulated in the ‘Data Seal of Approval’ (http://www.datasealofapproval.org) document, developed by Data Archiving and Networked Services (DANS).…”

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry

“…PROFILES data is made available through Questacy and can be accessed through the website ( www.profilesregistry.nl ) ( 83 ). To arrange optimal long-term data warehousing and dissemination, PROFILES follows the quality guidelines that are formulated in the Data Seal of Approval ( www.datasealofapproval.org ), developed by Data Archiving and Networked Services (The Hague, the Netherlands).…”