SNEAK PREVIEW

TGA Patient Data Registry in Collaboration with Sanford Research CoRDS

 

Coordination of Rare Diseases Sanford (CoRDS) is a centralized international patient registry for all rare diseases. The TGA Project has been working closely with CoRDS to create our own Transient Global Amnesia Patient Registry for future research in conjunction with the National Institutes of Health (NIH) Common Data Elements (CDE) Repository that was designed to provide access to structured human and machine-readable definitions of data elements. The TGA Registry has almost 100 questions specific to the TGA enigma. We are very close to live testing of our Registry. Here are three sample questions:

1. What is the total number of TGA’s experienced?

2. Just before your TGA, did your witness realize something was wrong?

3. Was the participant satisfied with the emergency room or medical provider’s discharge treatment plan for the first or most recent TGA episode?

               

When we are ready for live testing there will be three steps to enroll in the TGA CoRDS Registry:

1. Complete the CoRDS Screening Form, where CoRDS personnel will review your eligibility and send you the materials to enroll via your preferred enrollment method.

2. Complete the CoRDS Informed Consent Form which describes how your information is kept and used in order to be considered enrolled in the registry.

3. Finally, complete the TGA CoRDS Questionnaire with contact, clinical, and demographic information to be stored in the TGA CoRDS Patient Data Registry.

               

Our TGA Registry Questionnaire has been reviewed by our Ad Hoc Committee. We are on Draft # 6 with bi-monthly conference calls with the Sanford Research staff. We have also had help from the NIH and NORD (National Organization for Rare Disorders. Our Registry has been a zero cost project for the future benefit of TGA patients.