HEALTH-eBRAIN STUDY PHASE II
YOU CARE. AND WE CARE ABOUT YOU.
GALAXY is a virtual gateway to a constellation of innovative initiatives that makes it easy for you to influence and participate in AD research
It showcases private/public partnerships and projects, supported through non-profit collaboration, that focus on modeling new online ways to support those living with AD and their families. It offers efficient social media channels to help affinity organizations share in and cross promote online and mHealth studies to their networks.
GALAXY is the launch pad for the A-List – the collective voice of those living with Alzheimer’s and other dementias, at-risk adults, caregivers and families, who demand that their preferences are heard and respected by the research community.
GALAXY connects you with patient advocacy organizations and those in industry, academia and government focused on developing, conducting, and disseminating Patient/Caregiver-centered dementia research.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). See illustrated PCORnet overview. The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.
GALAXY, while a distinct initiative, shares the 3-year goals of the Alzheimer’s and Dementia Patient and Caregiver Powered Research Network (AD-PCPRN) to amplify the Patient and Caregiver voice to accelerate development of effective treatments for Alzheimer’s disease (AD) and related dementias and support minority recruitment, as well as increased screening and referral of participants for clinical trials.
Authorized by the Patient-Centered Outcomes Research Institute (PCORI), the partners are Mayo Clinic, University of Florida, UsAgainstAlzheimer’s and the Brain Health Registry at University of California, San Francisco.
UCSF Brain Health Registry is the web portal for AD-PCPRN participant and caregiver recruitment and collection of participant-reported outcomes.
Five prestigious Advisory Councils provide counsel and insight to the PCORI funded project, the AD-PCPRN. The Advisory Councils include many top leaders in Alzheimer’s research, registries, patient advocacy, minority engagement and public outreach, as well as patients and caregivers.Click here for official website for AD-PCPRN.
The contents of the Galaxy Site are not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the Galaxy Site. If you think you may have a medical emergency, call your doctor or 911 immediately.