Discovery of MRC-funded studies and data
For the purpose of this guidance, discovery refers to the visibility of studies and therefore the ability for new and potential users to find out about existing studies and variables. It also helps them judge from the information available whether the study data are suitable for their planned research.
Requirements
R21. An MRC study that is actively collecting or analysing data (or otherwise is recognised as having value for new users) is readily discoverable by the research community.
Expectations
1. The study has a website that provides up-to-date summary information about the study purpose, the cohort profile and kinds of information being collected, in sufficient detail to inform the general public about the study and consistent with the expectations and sensitivities of the study participants.
2. Once a study is collecting data, the study website contains a technical description of the study and variables for use by the research community, or provides a direct working link to that information.
- Published information includes a reference cohort profile and reference publications (describing the cohort and study).
- A full variable list is browsable, searchable or downloadable by bona fide researchers
- The study description and metadata about usable variables is made available through the MRC Research Data Gateway (once operational) and, optionally, through other means.
3. The study website and links provide the public and the research communities with informative examples of significant research findings. They highlight the role in those studies and findings of cohort participants, the wider public, patient and service user group involvement, research collaboration and other forms of data-sharing and how participant confidentiality is secured.
Further good practice
1. A single main reference publication is specified for citation of the study (e.g. cohort profile in International Journal of Epidemiology).
2. Progress with any current wave(s) of collection, and expected availability of that data, is regularly updated.
3. Sample (blank) questionnaires or interview guides used for each completed wave are downloadable by bona fide researchers, optionally including any restrictions on copyright and re-use.
5. The variable list includes metadata such as value lists, completion rates, data quality indication etc.
6. Studies implement MRC software for “my favourites” or “shopping baskets” of commonly requested variables that can be defined and easily requested by researchers.
Resources
A prototype of the MRC Research Data Gateway, implemented in 2011, supports the documentation and discovery of comprehensive variable lists and their metadata. This gateway contains a Population and Patient Research Data directory. Tools for incorporating study-specific metadata in various commonly used formats are also being developed.
Examples of MRC-funded studies with informative websites include the following:
- The Avon Longitudinal Studies of Parents & Children (ALSPAC)
- Whitehall II - A study of social class, psychosocial factors and lifestyle as determinants of health and ill health.
In both cases, the study data sharing policy, data dictionary and questionnaires are readily accessible one-click and PDF file away from the study’s home page.
The National Data Archive (NADA) is an open source web application, developed by the International Household Survey Network, for the cataloguing and dissemination of microdata documented in compliance with Data Documentation Initiative (DDI) and Dublin Core metadata standards. It can be used to build a data catalogue and portal for browsing, searching, applying for access and downloading data and metadata based on DDI.
Nesstar allows the publishing and dissemination of metadata and data.