Software as a Service (SaaS) 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 SaaS (Software as a Service).

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

Download SaaS Request Form

Description:

BHR offers the use of its Software as a Service (SaaS) to help collaborators run and manage their own studies. BHR manages the software, such as backup, scaling, troubleshooting, and ongoing development; while collaborators can utilize the software’s features to design, execute, and control their study.

Software as a Service (SaaS) Programs, UCSF Brain Health Registry

Some of the basic features of BHR SaaS include:

  • Personalization and custom design of the Participant Portal. The
  • Participant Portal is the front-end view that can be displayed to participants when enrolling into a project supported by BHR SaaS.
  • Participant registration which includes the ability to allow for self-registration or registration by invitation only. Upon registration, participants will create an account by designating a unique user name and password, which are used to login to the participant portal.
  • Online consent form, which can be uploaded to outline the study in detail and describe the participant’s role and rights in the study.
  • Data collection, including the integration of study tasks such as questionnaires and cognitive tests (provided by 3rd party vendors), the customization of study design (such as layout of specified study tasks), and the implementation of longitudinal data collection.
  • Participant communication, which can be configured as both HTML and Plain Text emails messages (ex. the creation of custom automated email reminders).

Some of the additional “Add-on” features of BHR SaaS include:

  • Referral program management, in which collaborators can establish and manage the referral of their study participants to specific future and/or additional research projects.
  • Spit Kit Management, allows investigators to track the mailing and receiving of spit kits (which can then be sent to an external third party lab for genetic analysis, including ApoE status).
  • The Caregiver and Study Partner Portal (CASPP) allows participants to have the opportunity to identify and invite a study partner.

Download PDF of CASPP Questionnaires

Collaborating investigators obtain approval from their local Institutional Review Board (IRB) to use BHR software to design their own Internet-based studies. The collaborator will be completely responsible for running the project, contacting participants and collecting data. They will have complete control over study design including the ability to design their own landing page, questionnaires, cognitive tests, and participant communications.

All patient health information and data collected using BHR SaaS belongs to the collaborator. BHR staff does not have permission to access or use the data collected, unless explicitly granted through a Data Sharing Agreement. However, BHR can use the aggregate data for general metrics to evaluate usage and performance of the BHR platform. The collaborator will determine if they wish to share de-identified data with the BHR team and have an academic partnership, but this will not be a requirement.

The BHR team will provide the following support in a BHR SaaS:

  • Respond to general questions
  • System bug fixes and/or troubleshooting that may arise with the use of the software
  • Building out and sending a dataset (downloadable zip files containing a CSV) on a monthly basis
    • Note: this does NOT include building out a database or integrating databases
    • Currently, we only export all questionnaire responses and cognitive test data
  • Assistance with creating participant communication emails
  • Provide staff user support documentation & training on how to use the software
  • Operations of the software including:
    • Initial configuration
    • Maintenance
    • Monitoring of software performance
    • Responding to outages and downtime
    • Ensuring security of software
    • Regular upgrades and releases new versions of software

The BHR team is NOT responsible for the following support in a BHR SaaS:

  • Establishing relationships with 3rd Parties (non-UCSF entities whose software may be integrated into the BHR platform for data collection)
  • Establishing Qualtrics accounts in order to use the questionnaire features available in BHR
  • Configuration of collaborator’s studies
  • Running & maintenance of collaborator’s studies
  • Developing any new features or enhancements to features to the software

Next Steps:

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

Download SaaS Request Form

Summary of Steps:

1

Start-up (Initiation)

a) Download and complete the SaaS Request Form
b) Send the completed form to BHR (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

a) BHR will validate the initial configuration of the Collaborator's system prior to launch
b) BHR provides Collaborator Documentation and Training
5

Data Sets

a) Generate dataset and data dictionary
b) Provide dataset on predetermined schedule
6

Data Sets

a) Identify, report, and address any issues/bugs
b) Maintenance of software

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.