Background:

One of the goals of the Brain Health Registry is to assist with recruitment, assessment, and longitudinal monitoring of participants for neuroscience studies. We are eager to develop collaborations with other investigators who share the same goal of accelerating the development of improved diagnostic tests, effective treatments and preventative interventions for Alzheimer’s disease and other brain disorders. 

One of the ways that the Brain Health Registry can help facilitate clinical research is through a De-Identified Data Sharing collaboration. 


Please read the description and summary of steps below to help you to complete the De-Identified Data Sharing Request Form.

Download the Data Sharing Request Form

Description:

De-identified data collected in the BHR may be shared with qualified investigators. Collaborators may request a dataset that includes questionnaire data (self-report and study partner- report data on health, lifestyle, demographics, etc.), as well as cognitive assessment data obtained from 3rd party vendors. It is required for the collaborator to obtain approval from the 3rd party vendors (Cogstate, Lumos, MemTrax LLC) prior to receiving cognitive assessment data. BHR staff can help to facilitate the initial conversation with 3rd party vendors and provide contact information if needed. 

De-identified data sharing collaborations with investigators outside of the BHR research group will be governed by a Data Use Agreement. The Data Use Agreement requires that the collaborator agrees to terms including but not limited to the following: (1) will not attempt to establish the identity of, or contact any BHR participants; (2) will not further disclose these data beyond the uses outlined in the agreement; (3) will require anyone who utilizes these data, or anyone with whom they share these data within their group, to comply with the data use agreement; and (4) will comply with any rules and regulations imposed by their institution and its IRB in requesting these data.

Download PDF of DUA template


BHR has many different questionnaires available for analysis, please download questionnaires here:

Download PDF of BHR Questionnaires

Download PDF of CASPP Questionnaires


Investigators who are approved for data use are provided with the dataset via a downloadable CSV file. The data set is considered confidential information. 

BHR faculty and staff have invested considerable effort and already have extensive experience in creating the BHR dataset. Because of this, BHR faculty and staff wish to be involved with any data analyses and publications that use BHR data. Therefore, it is BHR policy that all investigators who receive BHR data adhere to the BHR Publication Guidelines, which includes Citation and Acknowledgment requirements for all abstracts, presentations, and publications using shared BHR data. Additionally, all data recipients are asked to explicitly inform BHR faculty of the data analysis plan, as well as to discuss the BHR faculty’s degree of involvement in analysis projects and authorship of any potential abstracts and papers.

Download BHR Publication Guidelines


Next Steps:

If you are interested in a De-Identified Data Sharing collaboration, please complete the Data Sharing Request Form and return the completed form to BHR.

Download the Data Sharing Request Form


Summary of Steps:

1. Start Up (Initiation)

          a) Download and complete the Data Sharing Request Form

          b) Send the completed form to BHR  at investigators@brainhealthregistry.org for review

2. Program Plan

          a) Develop a scope of work including project objectives and timeline

          b) Determine budget

3. Contractual Agreement

          a) Execute a legal contractual agreement

          b) Obtain third party approvals and/or relationships, if applicable

4. Launch/Datasets

          a) Generate dataset and data dictionary

          b) Provide dataset on predetermined schedule

Please note some steps may run concurrently to expedite process.