The result is a new member management system that also defines and manages communications, studies and stakeholders as they relate to the members within the Registry. This will enable researchers to better synthesise research data, monitor trends, identify issues, outcomes and manage resources.
It has also streamlined the communication network to better prompt the distribution of educational resources, study information and identify opportunities to engage with members for research purposes. The new system not only records this activity, it is sophisticated enough to identify where twins would fit into future, current or other studies based on member details and eligibility.
The new database now has the following capabilities:
- Member Management — new registration, updates to details, exchange of study progress reports and transmission of details of eligible participants, creates groupings, study involvement (including approaches, reminders, responses, comments and links to the study)
- Member Communications — records data and search functions, enables capture of all forms of communication to members/stakeholders, sends study invitations, and selects potential twin pair participants based on specific requirements
- Member Query — extracts information and query data associated with members
- Study/Questionnaire Data Management — records and tracks studies and contact with researchers, and consolidates questionnaire responses for further study
- Reporting — checks data accuracy, provides communication progress reports on studies, enables filtering function to find any potential members for study opportunities
- Additionally, development code and knowledge have been shared with TRA and MSPGH Informatics to support contingency planning and future database enhancements.