Patient registries and databases collect uniform data that help researchers evaluate a particular disease population. Registries are used for many reasons, including but not limited to development research hypotheses, tracking clinical care and outcomes, and to sharing information with patients about clinical trials that are enrolling, to develop research hypotheses, disseminate research results.
Below are two opportunities to enroll. If you were diagnosed with any subset of eosinophil-associated disease, we encourage you to enroll in the Eosinophil.Connect Patient Insights Network. If you were diagnosed with a subset of eosinophilic gastrointestinal diseases (EGID), we encourage you to enroll in both the Eosinophil.Conenct registry and the EGID Partner registry.
Eosinophil.Connect Patient Insights Network
For all subsets of eosinophil-associated diseases
The Eosinophil.Connect Patient Insights Network is a comprehensive database of individuals who are diagnosed with an eosinophil associated disease, to better understand the characteristics of these diseases, to determine areas that need further research, and to help pharmaceutical companies with the development of treatments to improve the lives of those affected. It is open to patients with all subsets of eosinophilic disorders, including those that are not specific to the gastrointestinal tract.
To help generate research and academic interest in eosinophil-associated diseases, APFED partners with Invitae to offer this interactive, online platform for surveying disease communities, uploading medical records, tracking health outcomes and sharing de-identified disease data. It’s HIPAA compliant, secure and research-ready.
EGID Partners Registry
For those with eosinophilic gastrointestinal diseases
EGID Partners is an online cohort of patients with eosinophilic gastrointestinal diseases (EGIDs) brought to you in a collaboration between Patient Advocacy Groups and Researchers. EGID Partners engages patients to help guide research. People without EGIDs are also encouraged to join so data can be compared.