Today, Sue interviews Patient Registry Director Luis Garcia about the FARE Patient Registry. Recently enrollment was opened of the FARE Patient Registry, a database through which food allergic people can anonymously share their medical histories to help accelerate the pace of research. Together Luis and Sue discuss why this registry is important and what it could mean for the future of research and a possible cure.
- What is the FARE Patient Registry?
- How will the data be used?
- How is big data key to the big picture of food allergy research?
- Who can register?
- What kind of data will the registry collect?
- Will registrant information be secure/private?
- Will this assist registrants to get involved in clinical studies?
- How will the registry keep up with registrants? Will there be periodic questionnaires/surveys?
- Does it cost anything?
- Can registrants also be registered in the Asthma and Allergy Foundation of America's Food Allergy Patient & Family Registry?
- How many years do you plan to do the survey?
More about the FARE Patient Registry
Food allergies affect too many of us, but we can find strength in numbers. The newly launched FARE Patient Registry will collect and store de-identified information about people with diagnosed food allergies. As more patients enroll in the registry, their pooled experiences will offer valuable insights into food allergy prevalence, management, and outcomes. The registry database will be available to researchers, clinicians, the food allergy community and others working to reveal the causes of food allergy, uncover why food allergy rates have increased in recent years, and identify which treatments might be most effective for individual food allergy patients. To participate, you must be able to give informed consent online. Visit foodallergypatientregistry.org to learn more and register.
About Luis Garcia
Luis is the Patient Registry Director of Food Allergy Research & Education (FARE) and plays a key role in the creation and implementation of the FARE Patient Registry, including platform and survey development, data curation and working closely with technology vendors, as well as with FARE’s Medical Advisory Board and staff.
Luis has a diverse background including work in Clinical Research and experience as a Clinical Registry Manager. He previously worked as a Professor of Medical Sciences. Luis completed his Pre-medical studies at Miami Dade College and Florida International University. Later, he went on to receive a Doctor of Medicine degree from Universidad IberoAmericana (UNIBE), College of Health Sciences, in the Dominican Republic.
Podcast: Play in new window | Download
Subscribe: Apple Podcasts | Android | Google Podcasts | Stitcher | RSS