View the poster here.

ILD is a group of rare, heterogeneous conditions causing lung fibrosis and inflammation. Different trajectories across the ILD spectrum call for better disease characterization. The rarity of ILD and other, physical, geographical or financial constraints are key barriers in studying cohorts or registries which are representative of the true spectrum of the ILD population.

In this poster, presented at ICLAF 2024, we share insights from AccessILD, fully remote registry that allows in-depth ILD stratification by combining Electronic Health Records (EHR) and electronic Patient Reported Outcomes (ePRO) data.

Launched in September 2022, AccessPD aims to address the challenges of PD research by leveraging electronic health records and electronic patient-reported outcomes within a fully remote, integrated platform. This poster provides an update on AccessPD’s progress, emphasizing the growth in patient recruitment, data integration, and the preliminary analysis aimed at advancing Parkinson’s disease (PD) research.

View the poster here

A Novel Approach to Patient Recruitment and Data Collection

The burden of cardiometabolic diseases (CMD) such as diabetes, heart disease, and stroke, along with associated risk factors like obesity, hypertension, and hyperlipidemia, represents a global health crisis that significantly impacts life expectancy, quality of life, and healthcare costs.

To address this challenge, the AccessCMD project aims to create a comprehensive registry with recall capacity for CMD and multimorbidity.

This initiative leverages electronic health records (EHR) to identify potential participants, enhancing our understanding of CMD through robust data collection and participant engagement strategies.

View the poster here.

Established in 2022, the AccessPD registry aims to create a comprehensive database integrating electronic health records, self-reported outcomes, and genetic data from Parkinson’s disease (PD) patients.

This report outlines our experiences with remotely collecting DNA samples to analyze genetic variants and risk factors associated with PD. View the poster here.