Data Access Request
The Global A-T Family Data Platform is a patient-driven effort overseen by A-T families and experts worldwide
through which health information, genetic and potentially other types of data about people with A-T can be shared
with researchers. This platform will enable researchers to access important patient data from around the world
quickly, securely and efficiently, hopefully leading to new discoveries.
Researchers should request access to the data using this Data Access Request (DAR) form which includes assurances
associated with the use of these data sets.
Our Data Access Committee (DAC) will review the DAR form submitted by the researchers and will either approve
or disapprove data access.
Researchers will certify that they will abide by the assurances given in this form, including agreeing not to
distribute controlled-access data in any form to any third parties other than their own research staff who have
agreed to these assurances. For projects that include collaborators at other institutions, collaborating
investigators are required to submit separate DAR forms.
Upon receiving access approval, researchers will be provided with specific credentials to authenticate their
identity and gain access to the controlled-access datasets. The DAC requests annual reports from researchers
about what has been accomplished using the data and any violations of the assurances that may have occurred.
Research Project Overview
Please note that coordinated requests made by researchers who are collaborating on the same project should use the same title.
Collaborators at different institutions from the PI must complete a separate DAR form.
Please provide a brief description of the proposed use of the dataset(s) to be reviewed by the Data Access Committee.
This statement should be one or two paragraphs in length and include research objectives, the study design and
an analysis plan. If you are requesting multiple datasets, please describe how you will use them.
I agree to the following assurances:
- Data will only be used for approved research.
- Data confidentiality will be protected and the investigator will never make any attempt at "re-identification."
- There will be no transfer of any part of the dataset to any other investigators or institutions (except
between collaborating investigators or any project assistants who answer directly to the Principal Investigator).
- All applicable laws and local institutional policies will be followed.
- Data will not be sold or shared with third parties.
- Accidental transfer of any part of the dataset will be prevented. Adequate security controls are in place,
such as secure laptops and storage devices; no downloading is allowed to unsecured network drives or servers.
- Report on the uses of the data, e.g. publications, will be provided to the DAC annually.
- The Global A-T Family Data Platform Dataset will be acknowledged in any publication or presentation resulting
from the use of the Dataset.
- Collaborating investigators from the researcher’s institution, as listed in the DAR form, agree to these Assurances.
- These assurances will be agreed to annually.