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De-Identified Data Sharing

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, Cambridge Cognition) 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 email investigators@brainhealthregistry.org to receive a copy of the current 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.

Personal Motivations

“

I’ve seen the impact of Alzheimer’s – I’ve had friends who have lost loved ones, and the toll is immense. So I see it as a privilege to help with medical research. I feel like this is a way I can pay it forward to future generations, including my own children.

Jackie BobergSaratoga, CA
“

There are many reasons why I'm participating in the Brain Health Registry, but here's the number one reason: my father. Ten years ago, he was diagnosed with Parkinson's disease. I want to help find a cure and participating in this project gives me the greatest opportunity to do just that.

Angela DanielsWindsor, CA
“

It’s been two years since my mom died while suffering from Alzheimer’s. I think about her every day. Participating in the Brain Health Registry is a way for me to honor her. It’s something I can do that’s real and tangible.

John FitzpatrickSan Bruno, CA
“

My godfather has Parkinson's. He's a priest, and the disease is taking away his ability to preach. I signed up with him in mind. If, in the long run, this can help save and empower voices like his, it will be a great thing. And I'd like to be a part of it.

Theresa WalshSanta Clara, CA
“

My college roommate was recently diagnosed with Parkinson's. She's working hard - exercising, meditating, doing yoga - to keep her symptoms at bay, and she's holding on to the positive attitude she's always had. I'm hoping this research can lead to a cure and help her stay positive and vital. That’s why I’m here.

Anne de la RosaSan Mateo, CA
“

PTSD doesn't have to break apart families or end lives, but it often does. Veterans like my dad who go into a war zone and come out with a devastating disorder deserve new and better treatments to help them live normal, happy and fulfilling lives. I am honored to take part in the Brain Health Registry so I might help those who have put themselves at risk in service to the nation.

Roxanna SmithOakland, CA

It’s easy to join!

(You must be 18 years or older)

1. Sign Up

You can join as an individual or with a partner.

2. Tell Us About Yourself

Answer some questions about your medical history, current health, and lifestyle.

3. Do Some Online Brain Tests

These tests exercise your memory, and are like games.