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HEALTH-eBRAIN STUDY PHASE II

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YOU CARE. AND WE CARE ABOUT YOU.

1st Online Club Partnering with Researchers for an Alzheimer’s Cure

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A missing piece in Alzheimer’s research is hearing from those who are closest to the disease.

  • First to be heard
  • First to sign-up
  • First to a cure

ABOUT GALAXY

Watch GALAXY Video

FOR ALL OF US

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.

FOR RESEARCHERS

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.

AD-PCPRN/PCORI

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.

THE PCORI-CONNECTION

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.

GOVERNANCE COUNCIL

  • Mayo Clinic – Ron Petersen, MD, PhD, Director, Alzheimer's Disease Research Center/ PCPRN Principal Investigator; Alex Alexander, AD-PCPRN Co-PI
  • UCSF/Brain Health Registry – Mike Weiner, MD, Founder, Brain Health Registry & Alzheimer’s Disease Neuroimaging Initiative
  • University of Florida of Public Health and Health Professions – Glenn Smith, PhD, Chair, Department of Clinical and Health Psychology
  • UsAgainstAlzheimer's – George Vradenburg, Chairman & Founder; Meryl Comer, Board Member/ AD-PCPRN Co-PI

AD-PCPRN SUPPORTING ORGANIZATIONS

PATIENTS & CAREGIVERS ADVISORY COUNCIL

  • AfricanAmericansAgainstAlzheimer's – Malcolm Ian Cross & Gurteen Taylor Schiavo, Patient & Caregiver Advocates
  • B. Smith Enterprises – B. Smith & Dan Gasby, Founders
  • Dementia Alliance International – John R. Sandblom, Founding Member; Treasurer; Board of Directors Member
  • On Pluto Project – Greg & Mary Catherine O'Brien, Early Onset Patient Advocates
  • Sterling Health IT – Mary Anne Sterling, CEA, CEO; PCORI Ambassador
  • The Kim and Glen Campbell Foundation – Kim Campbell, Founder; Founder, Careliving.org
  • University of California-Davis – Diana Myles, PhD, Professor Emerita
  • University of North Carolina, Chapel Hill - Leigh F. Callahan, PhD, Mary Link Briggs Distinguished Professor of Medicine; Associate Director, Thurston Arthritis Research Center; Director, Osteoarthritis Action Alliance; John Winfield, MD, Distinguished Professor of Medicine in Rheumatology Emeritus
  • UsAgainstAlzheimer's – Virginia Biggar, Executive Director, Patient, Caregiver & Faith Initiatives
  • UsAgainstAlzheimer's Facebook Care Community – Ann Napoletan, Moderator; President, Marilyn's Legacy; Loretta Veney, Moderator; Author, Being My Mom's Mom
  • WomenAgainstAlzheimer's – Karen Segal, Leadership Circle and Research Advocate (UsA2 Network)

COMMUNICATIONS & OUTREACH ADVISORY COUNCIL

  • BrightFocus® Foundation – Stacy Pagos Haller, President & CEO
  • Caregiver Action Network – John A. Schall, MPP, CEO
  • FDA – Marsha Henderson, MCRP, Associate Commissioner for Women’s Health, Office of Women’s Health
  • Frangiosa & Associates, LLC – Theresa L. Frangiosa, Principal & CEO
  • JBS International – Gail Bassin, President
  • LEAD Coalition – Ian Kremer, Executive Director
  • Leeza Gibbons Memory Foundation – Leeza Gibbons, Founder; CEO, Leeza Gibbons Enterprises
  • Mayo Clinic – Joyce Balls-Berry, PhD, MPE, Senior Associate Consultant, College of Medicine; Science Assistant Professor, Department of Health Sciences Research
  • National Alliance for Caregiving – Gail Hunt, President & CEO
  • National Institute on Aging, National Institutes of Health - Jennifer L. Watson, MA, Senior Public Affairs Specialist, Office of Communications and Public Liaison
  • Patients Like Me – Sally Okun, RN, MMHS, Vice-President Policy & Ethics, Human Protection Administrator
  • The Balm In Gilead – Dr. Pernessa Seele, President & CEO
  • Weill Cornell Medicine Center on Aging and Behavioral Research – Sara J. Czaja, PhD, Director, Division of Geriatrics and Palliative Care
  • Volunteers of America – Jatrice Martel Gaiter, Executive-Vice President, External Affairs
  • WomenAgainstAlzheimer's – Brooks Kenny, Executive Director (UsA2 Network)

DIVERSITY ADVISORY COUNCIL

  • 180 Health Partners – Glenda Wrenn, MD, MSHP, Chief Medical Officer
  • AfricanAmericansAgainstAlzheimer's – Stephanie Monroe, Director (UsA2 Network)
  • Columbia University – Jennifer Manly, PhD, Associate Professor, Neuropsychology in Neurology, G.H. Sergievsky Center & Taub Institute for Research in Aging & Alzheimer's Disease
  • Emory School of Medicine – Monica W. Parker, MD, Assistant Clinician & Faculty Member
  • Latino Alzheimer's and Memory Disorders Alliance (LAMDA) – Constantina Mizis, Founding Executive Director
  • LatinosAgainstAlzheimer's Network and Coalition – Jason Resendez, Executive Director; Daisy Duarte, Patient & Caregiver Advocate (UsA2 Network)
  • Rush Alzheimer's Disease Center – Lisa L. Barnes, PhD, Alla V. and Solomon Jesmer Professor of Gerontology and Geriatric Medicine
  • Wake Forest School of Medicine – Goldie S. Byrd, PhD, Professor & Director, Maya Angelou Center for Health Equity

REGISTRIES/CLINICAL TRIALS ADVISORY COUNCIL

  • Alzheimer's Association – Keith Fargo, PhD, Director, Scientific Programs and Outreach, Medical & Science Relations, TrialMatch
  • Banner Alzheimer's Institute – Jessica Langbaum, PhD, Associate Director, Alzheimer’s Prevention Initiative
  • Cleveland Clinic Lou Ruvo Center for Brain Health – Jane Bjorklund, CCRC, Research Coordinator III, Recruitment Specialist
  • CNSInnovations – Kate Zhong, MD, CEO
  • Eli Lilly and Company – Russell L. Barton, Senior Advisor Project Management & Chief Operations Officers, Global Alzheimer's Disease Team
  • University of California, San Francisco – Rachel L. Nosheny, Assistant Professor; Department of Psychiatry, San Francisco VA Medical Center
  • University of Southern California – Paul Aisen, MD, Professor, Department of Neurology; Director, Alzheimer’s Therapeutic Research Center
  • Weill Cornell Memory Disorders Program – Richard S. Isaacson, MD, Director, Alzheimer's Prevention Clinic

TECHNICAL ADVISORY COUNCIL

  • Genetic Alliance – Sharon Terry, President & CEO
  • Mayo Clinic – Richard Sharp, PhD, Lloyd A. and Barbara A. Amundson Professor of Biomedical Ethics Professor of Biomedical Ethics and Medicine Director, Biomedical Ethics Research Program
  • Mayo Clinic Health System New Prague – Veronique L. Roger, MD, Medical Director, Center for The Science of Health Care Delivery
  • National Institute on Aging, NIH – Laurie M. Ryan, PhD, Chief, Dementias of Aging Branch; Program Director, Alzheimer's Disease Clinical Trials, Division of Neuroscience

AD-PCPRN/UsA2 TEAM

  • Meryl Comer, Co-PI, AD-PCPRN
  • Debra R. Lappin, Senior Advisor, GALAXY; Principal, FaegreBD Consulting
  • Amber Roniger, Operations Associate & Council Coordinator, AD-PCPRN
  • Jason Resendez, Executive Director, LatinosAgainstAlzheimer’s (UsA2 Network); Project Representative, UsA2/ADDEN

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.