Symposium attendees noted that existing databases from different cohorts, locations, and diseases can be used to address cross-autoimmune disease questions. Further, attendees identified a need to explore standardizing elements for interoperability between cohorts and diseases.
The Maelstrom Catalogue is a user-friendly solution for data discovery (suggested by Helen Tremlett) containing:
- Comprehensive information about epidemiological research networks and studies, and the data they have collected.
- Information about harmonized data generated by these research networks.
- Search tools that allow users to:
- Learn about existing research networks
- Identify studies with targeted designs that collected information useful in answering specific research questions
- Search for variables collected within and across studies
- Obtain information about harmonization potential across studies and harmonized variables generated
Clinical/demographic population-based data resources (suggested by Sam Wu):
Cross-Autoimmunity Research questions using clinical/demographic population-based data (suggested by Sam Wu):
- Temporal trends and variation by age, sex, socioeconomic status, smoking, BMI, season of onset, and geographical region in US.
- Pattern of co-occurrence of top 20 autoimmune diseases including longitudinal data to understand sequence and timing of disease occurrence.
- Comparison of health care utilization and health outcomes between those with one autoimmune disease versus those with multiple autoimmune diseases.
Working on standardizing elements for data interoperability between cohorts and diseases.
Please contact us if:
- You are aware of other population based clinical/demographic databases
- You are interested in working on the questions suggested by Sam Wu
- You are interested in working on standardizing data elements
- You are interested in additional questions or approaches
