JENNIFER WATSON, MA NATIONAL INSTITUTE ON AGING, NIH MAY 19, 2016 Healthy Aging & Participation in Research What Older Adults Should Know

Learning Objectives for Today: Understand the need for research participation among older adults and how it’s connected to healthy aging Share easy steps that older adults can take to get involved in research Connect you with relevant resources or programs online and in your community Learn about ways that Aging Network & other professionals can share this information and resources with constituents

DELAY in research findings DELAY in study enrollment Source: Angela Jefferson, PhD, Vanderbilt Memory & Alzheimer’s Center

Maria, Area Agency on Aging Cindy, State Health Department

Maria, Area Agency on Aging Cindy, State Health Department

Key reasons why promoting research participation makes sense 1.Can empower older adults and caregivers 2.Provides a civic engagement opportunity for people of all health levels 3.Offers opportunities to build relationships with partners, including those in medical and research disciplines 4.Helps build the research base to improve practice & care 5.Part of core Information & Assistance/Referral role 6.Keeps you & your organization on the “cutting edge” of science & practice 7.Potential funding stream

Recruiting Older Adults into Research ROAR Toolkit /publication/roar-toolkit 11 ACL-NIH-CDC Toolkit includes: User Guide: Tips for use FAQs Social media messages Short & long slide decks with speaker notes Customizable flyers Now available in Spanish and Chinese!

Research and healthy aging

13 Overview of Topics Why research is important to healthy aging What you need to know about research studies How YOU can make a difference for yourself and future generations by participating

14 Living longer and healthier In 1900: Life expectancy: 50 years Top causes of death: pneumonia/flu & tuberculosis Today: Life expectancy: 74+ years Pneumonia & tuberculosis prevented or treated

15 Research and your health Discoveries from research led to the medicines and treatments we take for granted today: Vaccines to prevent infectious diseases such as tuberculosis Antibiotics to treat bacterial diseases such as pneumonia Medications to manage ongoing conditions such as high blood pressure and pain

16 Continuing to look for answers How can we prevent, or cure: – Heart disease and stroke? – Cancer? – Alzheimer’s disease and dementia? How can we improve care and quality of life? To find answers, scientists conduct research studie s

17 Example: Alzheimer’s Disease Brain disease that destroys memory and thinking Affects as many as 5 million Americans age 65+ A leading cause of death Currently no cure or treatment Major research underway to understand the disease and learn how to prevent, cure, and treat it

18 “When I was diagnosed with Alzheimer’s, I wanted to do everything possible to fight the disease. I talked with my doctor to find a clinical study that was right for me. I know I’m doing something that might help my children and grandchildren avoid the disease.”

19 What you need to know about research studies

20 Many types of research that need people Interviews and surveys Understanding disease Improving detection and diagnosis Prevention Testing drugs and non-drug treatments for safety and effectiveness Testing ways to support caregivers

Benefits of volunteering for research Help others, including future generations of your family who may be at risk Learn more about your health conditions from experts Receive regular monitoring by health professionals Get information about support groups and resources in your community 21

22 Protecting your safety and privacy Researchers are required to follow strict rules, enforced by the Federal Government, to protect participants’ safety and privacy. Institutional Review Board Data Safety Monitoring Committee Informed Consent Right to Withdraw Privacy

23 Concerns about participating? If you have many health problems, can you participate in a study that is looking at only one condition? If you are frail or have a disability, will you be strong enough to participate? If you no longer drive, how can you get to the study site? Get your questions and concerns answered by your doctor and the research team.

24 Research Studies Need Everyone – Including YOU! Men and women, of all ages, of different racial and ethnic backgrounds, who are healthy or who have health problems

25 How YOU can make a difference for yourself and future generations

26 Join in to make a difference! Many research studies are going on right now that urgently need a large number of volunteers. Can you help?

27 One easy way to make a difference Sign up with a research registry or matching service. You will be contacted when studies are looking for people like you. You can learn more about a study and decide if you would like to participate. It’s always your choice whether or not to take part in a study. Your information will remain confidential.

28 ResearchMatch Go to You must have an address to sign up with ResearchMatch. You can call if you need help with online registration.

29 Alzheimer’s Registries Alzheimer’s Prevention Registry Brain Health Registry Alzheimer’s Association TrialMatch

30 “All of the progress that’s been made in medical treatments has occurred because people have stepped up to the plate and participated in clinical trials. They may have been your neighbor, they may have been your relative, they may have been someone who you do not know and will never know. But it’s through the efforts of those individuals and many thousands like them that we can make a difference.”

Recruiting Older Adults into Research ROAR Toolkit /publication/roar-toolkit 31 ACL-NIH-CDC Toolkit includes: User Guide: Tips for use FAQs Social media messages Short & long slide decks with speaker notes Customizable flyers Now available in Spanish and Chinese!

32 NIA Resources /volunteer /alzheimers-and-dementia- resources-professionals

Thank you for helping to ROAR!

Questions? Want more information? Contact: Jennifer Watson National Institute on Aging, NIH 301/