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, 53 different research projects have contributed data to this initiative, resulting in a pooled dataset >44,000 older persons and >9,000 informal caregivers.
For a detailed background 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 What is the mission of TOPICS-MDS?
The mission of TOPICS-MDS is to represent the values of older persons in research and clinical practice. Our main goal is to promote standardization in clinical practice in order to improve patient centered care. Additionally, we focus on promoting standardization in geriatric practice, in order to better compare data and make more impact. Lastly, we stimulate reuse of the TOPICS-MDS database to efficiently contribute to knowledge on older persons (care).
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.
1.4 How is TOPICS-MDS funded?
TOPICS-MDS Data Sharing Inititiative was initially 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, pleadse visit the Dutch National Care for the Elderly Programme website and the Memorabel website.
1.5 How long is the study scheduled to run for?
TOPICS-MDS is currently funded through 2020. Additional funding sources are being sought to promote the sustainability of the database and to carry out studies that are in line with the TOPICS-MDS mission. News on funding will be published under News on this website.
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, The Netherlands. 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 format.
3.1. What supporting documentation is available?
Access to TOPICS-MDS questionnaires (Dutch and English versions), codebooks and syntax are openly available to facilitate the use of TOPICS-MDS. Metadata are described in a project overview and are partly included in the TOPICS-MDS database (e.g. project study design, sampling frame, intervention group). A separate overview shows the response rates per project per time of measurement. This information is also open to users to assist in interpretation of the database.