1. ABOUT TOPICS-MDS
1.1 What is TOPICS-MDS?
The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) is a public data repository which contains information on the physical and mental health and wellbeing of older persons and informal caregivers across the Netherlands. The database was developed in part to ensure uniform collection of outcomes measures, thus promoting comparability between studies. To date, 60 different research projects have contributed data to this initiative, resulting in a pooled dataset >30,000 older persons and >3,000 informal caregivers. For a detailed back on the development and implementation of TOPICS-MDS, please refer to the following publication: The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
1.2 When and where are TOPICS-MDS data collected?
To date, TOPICS-MDS has collected information for >30,000 older persons and >3,000 informal caregivers across the Netherlands. Although data collection for several projects commenced in 2010, since TOPIC-MDS is a pooled database of projects with various study protocols, timing of data collection differs between projects. Thus, TOPICS-MDS represents a dynamic database which is regularly updated with new observations.
1.3 How is TOPICS-MDS organized?
TOPICS-MDS project was carried out as a collaborative effort between the eight medical research centres in the Netherlands, with Radboud University Medical Center serving as the central institution. A Project Group was established to advise on the development and maintenance of TOPICS-MDS and comprised of twelve members, a single representative from each medical centre and four additional working group members with expertise in database management and epidemiology. To ensure the commitment of all involved parties, TOPICS-MDS project was overseen by a nationally representative Steering Committee comprised of eight stakeholders from different geographical regions within the national network.
1.4 How is TOPICS-MDS funded?
TOPICS Data Sharing Initiative is funded by The National Care for the Elderly Programme on behalf of the Organisation of Health Research and Development (ZonMw – The Netherlands). For further information, please visit the Dutch National Care for the Elderly Programme website.
1.5 How long is the study scheduled to run for?
TOPICS-MDS is currently funded through 2015. Additional funding sources are being sought to promote the sustainability of the database.
2. DATA ACCESS
2.1 Who can use the data?
Every person with scientific or professional affiliation interested in older persons' and caregivers' health and wellbeing are invited to use the data for research purposes. All data users will be required to complete a data request form. More information can be found here. Please contact the TOPICS-MDS working group for more information (firstname.lastname@example.org).
2.2 Where can I download the data?
TOPICS-MDS data are maintained and distributed by Radboud University Medical Centre, Nijmegen, Nederlands. Data will be directly provided to the user subject to completion and approval of a data request form.
2.3 Which data formats are available?
TOPICS-MDS data are provided in SPSS and SAS format.
3.1. What supporting documentation are available?
Access to surveys (English version), codebooks and syntax for derived variables are openly available to facilitate the use of TOPICS-MDS. A separate database describing project characteristics (e.g. project study designs, response rates, attrition) is currently in progress, and this information will also be open to users to assist in interpretation of the database.