Referral Programs

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 Comprehensive Referral Program. A Comprehensive Referral is the referral of existing BHR participants to other research studies.

Please read the description and summary of steps below to help you to complete the Comprehensive Referral Request Form.

Download Comprehensive Referral Request Form

Description:

The Brain Health Registry (BHR) offers a way to accelerate the recruitment process for clinical research by using the online data obtained within BHR to pre-screen and identify individuals who may meet entry criteria for other research studies. Once eligible individuals are identified, they can then be referred to those other research studies.

Comprehensive referrals originate from the pool of enrolled BHR participants who have completed self-and study partner- report questionnaires on health, lifestyle, demographics, etc. and/or cognitive tests. Prior to site referrals, BHR uses this data for screening to identify likely candidates for a collaborator’s study. In order to be referred to additional studies, BHR participants must opt-in to learning about future research opportunities.

Referral Programs, UCSF Brain Health Registry

BHR participants selected for referral to a collaborator study are emailed by BHR. Referral emails include a unique invitation code, information about the referral study, and a link to login to the BHR website where referred participants can retrieve site contact information and sign a data sharing consent, if applicable. The content of this referral email is generated jointly between BHR and the collaborator. BHR and the collaborator will also work together to develop recruitment materials for the referral program, including invitation emails that BHR will send to BHR participants, reminder email(s), and a referral study description.

Referrals can be distributed to sites all at once or incrementally, depending on study needs or staff capacity. This scheduling feature can be useful for managing site burden, including periods of limited staffing or high demand. The distribution schedule can be dynamic and adjusted at any time.

Collaborators are asked to log into the BHR Investigator Portal, a secure online tool developed by the BHR, to view the status of referral programs and report on study enrollment. Instructional and training materials for use of the Investigator Portal are provided by BHR.

Example of Referral Dashboard

Referral Programs, UCSF Brain Health Registry

Comprehensive referral programs function under both UCSF’s IRB and the collaborator’s IRB. Collaborator’s IRB should be amended to include BHR as a recruitment source. Collaborator IRB protocol should also include that site staff will provide information about BHR participants who make contact with the site, including information on interest level, eligibility, and enrollment in the referral study. BHR can provide the collaborator with the following materials: a) copy of redacted BHR protocol; b) suggested text that describes BHR and identifies it as a recruitment source; c) templates for emails and any other participant communication; and d) any other additional documents required by the collaborator IRB.

Download Referral Email Template

Download Study Description

Download Data Sharing Consent

Program Add-on:

Additional screening:

Upon collaborator request, additional screening for comprehensive referrals can be collected by BHR through the use of other detailed questionnaires and/or cognitive data at one or more visits. This allows a study to use their own specific inclusion/exclusion criteria and site location information to identify a potentially more suitable referral.

BHR data on referred participants:

Existing BHR data  collected on referred participants can be provided to the collaborator. The BHR participants would need to complete a data sharing consent prior to any data being shared. A data dictionary and dataset would be generated and shared on a pre-determined schedule.

Next Steps:

If you are interested in a Comprehensive Referral Program, please complete the Comprehensive Referral Request Form and return the completed form to BHR.

Download Comprehensive Referral Request Form

Summary of Steps:

1

Start-up (Initiation)

a) Download and complete the Comprehensive Referral Request Form
b) Send the completed form to BHR (investigators@brainhealthregistry.org) for review
2

Program Plan

a) Identify the number of potential referrals
b) Develop a scope of work including project objectives and timeline
c) Determine budget
3

Contractual Agreement

a) Execute a legal contractual agreement including data use agreement
4

Regulatory

a) Obtain institutional IRB approvals
5

Configuration

a) Build referral program with site location and study criteria
b) Create participant communication emails
6

Launch

a) Send referral emails on a predetermined schedule and volume
7

Reporting

a) Referral information viewed
b) Enrollment reported
8

Support

a) Identify and report any issues; modifications, as needed

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.