Connecting Science to People

1. Connecting Science to People Janet S. Austin, Ph.D. Director, Office of Communications and Public Liaison National Institute of Arthritis and Musculoskeletal and Skin Diseases National Institutes of Health

2. Connecting Science to People Communication Objectives • Make medical research personally relevant • Serve as trusted source of health information • Explain NIH’s role in medical research

3. NIH Resource: NIH Web Site, www.nih.gov

4. NIH Resource: Other NIH Web Sites http://medlineplus.gov http://clinicaltrials.gov

5. Connecting Science to People NIAMS Mission • The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, a component of the U. S. Department of Health and Human Services’ National Institutes of Health, is to support: • research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, • the training of basic and clinical scientists to carry out this research, and • the dissemination of information on research progress in these diseases.

6. Connecting Science to People “Our research belongs ultimately to the American people, for whom we serve as stewards in improving the public's health.” Stephen I. Katz, M.D., Ph.D. NIAMS Director

7. What OCPL Does • Web management • Communications support • Clearinghouse contract management • Multicultural health communications • Web content management • Publications • Feature writing • Media liaison • Inquiry response • Outreach • Public liaison 

8. OCPL Staff • Writer-editors • Public affairs specialists • Health educators • Public liaison officer • Web manager • Information assistants • Support staff • Project officers

9. Points of Service • NIAMS Office of Communication and Public Liaison (OCPL) • NIAMS Information Clearinghouse • NIH Osteoporosis and Related Bone Diseases~National Resource Center

10. Publications: Production and Dissemination • Handouts on Health • Questions and Answers series • Fact Sheets • Special publications (e.g., Progress and Promise) • Easy-to-read, bilingual, and Spanish publications • Information packets • Newsletters: Shorttakes, IRPartners, E-Blast

11. Public Liaison • Outreach to constituency groups • Contact for constituent referral for Members of Congress • Liaison to NIAMS Coalition • Public contact for policymatters

12. Web Content Management • Web design • Web policy • Information updates • Technology issues • Inquiry response • Content

13. Information Development and Dissemination • Guiding Principles: • Provide culturally appropriate, audience-specific educational materials written in plain language • Routinely review and revise existing materials • Facilitate rigorous review of NIAMS materials by the scientific and lay communities • Work collaboratively with other NIH/DHHS organizations, voluntary and professional groups, and universities and medical centers in developing materials • Effectively use intermediaries for distribution, including faith- and community-based organizations, NIAMS partners, the Federal Consumer Information Center, and health professionals

14. Arthritis Overview

15. What is Arthritis and Rheumatic Disease? • Rheumatic diseases involve the muscle, joints, and bones. There are over 100 rheumatic diseases. • Arthritis literally means joint inflammation. • Many rheumatic diseases cause inflammation of joints and also muscle, bones, and other supporting structures.

16. Diagnosing Arthritis • Early diagnosis and treatment is important. • Diagnosis can be difficult because some symptoms and signs are common to many different diseases. • It may take more than one office visit for the doctor to make an accurate diagnosis. 

17. Treating Arthritis Treatment Goals: • Relieve pain • Control inflammation • Slow down or stop joint damage • Improve well-being and ability to function • Prevent disability

18. Ways to Treat Arthritis • Lifestyle changes • Medications • Surgery • Complementary and alternative medicine and nutritional supplements

19. Lifestyle changes • Healthful diet and weight control • Exercise • Rest and relief • Non-drug pain relief

20. Healthful Diet and Weight Control • An overall nutritious diet is important • Weight loss can reduce stress on weight-bearing joints • Limit or avoid consuming alcohol • A dietitian can help

21. Exercise • Reduces joint pain • Helps maintain healthy weight • Increases flexibility, muscle strength, cardiac fitness, and endurance • Ask a doctor or physical therapist what exercises are best for you

22. Rest and Relief • Learn your body’s signals on when to stop or slow down • Rest helps reduce joint inflammation and fights fatigue • Short breaks better than prolonged time in bed • Splints or braces can take pressure off joints • Assistive devices helps reduce joint stress

23. Non-Drug Pain Relief • Relaxation, distraction, visualization exercises • Heat and cold treatments • Massage • TENS

24. Medications Analgesics(pain relievers) Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) Biological response modifiers Corticosteroids Disease-Modifying Antirheumatic Drugs (DMARDs) Hyaluronic acid products

25. Questions to Ask Your Doctor or Pharmacist • How often should I take this medicine? • Should I take this medicine with food or between meals? • What side effects might occur? • Should I take this medicine with the other prescription medicines I take? • Is this medication safe considering other medical conditions I have?

26. Surgery Surgery is used to: • Reduce pain • Improve the affected joint’s function • Improve ability to perform daily activities Things to consider • Level of disability • Intensity of pain • Age • Occupation • Level of interference with the patient’s lifestyle

27. Complementary and Alternative Therapies Ongoing research on therapies for people with osteoarthritis: • Acupuncture • Nutritional supplements • Glucosamine and chondroitin sulfate • Vitamins D • Green tea

28. NIAMS Arthritis Research OAI CARRA NARAC NIAMS IRP

29. Osteoarthritis Initiative (OAI) • A Public-Private Partnership • Funded by 7 NIH Components, the FDA and several pharmaceutical companies • Includes 4,800 participants at risk for developing knee OA • GOALS: • To create research resources to aid in the identification and evaluation of biomarkers for OA • To further drug development and improve public health

30. North American Rheumatoid Arthritis Consortium (NARAC) • A multicenter group that seeks to identify RA susceptibility genes • Recent discoveries include the identification of susceptibility genes common to people with RA and lupus, and identifying a new RA susceptibility gene region

31. Childhood Arthritis & Rheumatology Research Alliance (CARRA) NIAMS supports many CARRA studies, including: • Trial of Early Aggressive Therapy in Juvenile Idiopathic Arthritis

32. NIAMS Intramural Research Program (IRP) • NIAMS Community Health Center (Cardozo area of Washington, D.C.) • NIAMS Pediatric Rheumatology Clinic • NIAMS Cartilage Biology and Orthopaedics Branch • NIAMS Arthritis and Rheumatism Branch

33. For more information www.niams.nih.gov/health_info

34. 2 AMS Circle Bethesda, MD 20892 - 3676 Phone: 301-495-4484 Toll Free: 877-226-4267 Email: NIAMSInfo@mail.nih.gov http://www.niams.nih.gov/health_info NIAMS Information Clearinghouse

35. Osteoporosis Overview

36. Why Are Healthy Bones Important? • Strong bones support us and allow us to move • Bones are a storehouse for vital minerals • Strong bones protect our heart, lungs, brain and other organs

37. Osteoporosis • Osteoporosis is defined as a skeletal disorder characterized by compromised bone strength predisposing to an increased risk of fracture. Osteoporosis Prevention, Diagnosis, and Therapy. NIH Consens Statement 2000 March 27-29; 17(1): 1-36.

39. Prevalence • In the United States 8 million women and 2 million men have osteoporosis • An additional 34 million Americans currently have low bone mass • One out of two women and one out of four men aged 50 years and older will suffer an osteoporosis-related fracture in their lifetime

41. Osteoporosis risk factors that you cannot change • Gender – risk is greater for women • Age - the older you are, the greater your risk • Body size - Small, thin-boned women are at greater risk. • Ethnicity - Caucasian and Asian women are at highest risk. African American and Hispanic women have a lower but significant risk. • Family history - Fracture risk may be due, in part, to heredity.

42. Osteoporosis risk factorsthat you can change • Sex hormones - Abnormal absence of menstrual periods (amenorrhea), low estrogen level (menopause), and low testosterone level in men. • Anorexia nervosa - increases risk • Calcium and vitamin D intake - A lifetime diet low in calcium and vitamin D. • Medication use - Long-term use of glucocorticoids and some anticonvulsants and others.

43. Osteoporosis risk factorsthat you can change • Physical Activity - An inactive lifestyle or extended bed rest tends to weaken bones. • Cigarette smoking - Cigarettes are bad for bones as well as the heart and lungs. • Alcohol intake - Excessive consumption increases the risk of bone loss and fractures.

44. DXA: The Gold Standard

45. Medications • Bisphosphonates - Bisphosphonates slow the bone breakdown process. Healthy bones are in a state of continuous breakdown and rebuilding. As you get older, and especially after menopause when your estrogen levels decrease, the bone breakdown process accelerates. When bone rebuilding fails to keep pace, bones deteriorate and become weaker. Bisphosphonates basically put a brake on that. • Raloxifene - Raloxifene is in a class of medications called selective estrogen receptor modulators (SERMs). Raloxifene prevents and treats osteoporosis by mimicking the effects of estrogen (a female hormone produced by the body) to increase the density (thickness) of bone. • Calcitonin - Calcitonin is a medicine that slows the rate of bone loss and relieves bone pain. • Teriparatide - Teriparatide contains a synthetic form of natural human hormone called parathyroid hormone (PTH). It works by causing the body to build new bone and by increasing bone strength and density (thickness). • Estrogen/Hormone Therapy

46. Universal Steps for Strong Bones • A diet rich in calcium and • vitamin D • Regular weight-bearing activity • Healthy lifestyle

47. Calcium • Food sources are recommended • Dairy products • Fortified foods • Green vegetables • Supplements are often necessary

48. How Much Calcium?

49. Vitamin D • Necessary for the absorption of • calcium • Synthesized in skin on exposure to • sunlight or ingested in foods such as • egg yolks,fish, liver, or supplements • Fortified milk, cereals and orange • calcium

50. Vitamin D: The Sunshine Vitamin • According to National Osteoporosis Foundation, usually 10-15 minutes exposure of hands, arms and face two to three times a week (depending on one's skin sensitivity) is enough to satisfy the body's vitamin D requirement.