TGA Patient Data Registry
A Collaborative Effort by TGA Project
and Sanford Research
Summary Report as of 7/20/2020
1. REGISTRY GOAL
The TGA Project's International Patient Data Registry's goal is to create a central resource of data relating to Transient Global Amnesia (TGA). Over 3 years in the making and on March 3, 2020, the TGA Project was approved by the Internal Review Board at Sanford Research to open the International Patient Data Registry in collaboration with Sanford Research at no cost to us or the TGA patients who participate.
2. OPENING DATE
The Registry opened March 12, 2020. Click the button at bottom of page to go directly to Registry.
Registry security is provided by Sanford Research. There is a 3-part enrollment process, a secure login page, de-identified personal data, and a Scientific Advisory Board to oversee policies and procedures. Researcher access requires the researcher to provide their facility's Internal Review Board and then to have their research proposal reviewed by Sanford's Advisory Board. Sanford's personnel will contact a patient directly with further details if selected.
4. ENROLLMENT in 3 SEGMENTS
Screening Activation Form,
Consent & General Demographics, and
TGA Specific Questionnaire
5. QUESTIONNAIRE DESIGN
The format follows the guidelines of the NIH Office of Rare Disease Research (ORDR) Common Data Elements.
This is not a survey, but a scientific document following NIH guidelines. A participant may be contacted by CoRDS regarding a potential research opportunity. There is no cost to participate. There is no stipend for participating unless a researcher posts a payment schedule. There is no guarantee a participant will be selected for a research study or clinical trial. That is the discretion of the researcher. There is no schedule or timeframe for any future studies or trials. It is the participant's responsibility to inform Sanford Research of changes in the participant's demographics. a participant can withdraw at any time with proper notice.
CoRDS = Coordination of Rare Diseases Sanford
GARD = Genetic and Rare Diseases Information Center
IRB = Internal Review Board, an over-watch group for many programs
NIH = National Institutes of Health, Washington DC
NORD = National Organization Rare Disorders
SAB = Science Advisory Board Sanford Research
8. CONTACT POINTS
Marathon, NY 13803
Sioux Falls, SD 57104