Putting Our Heads Together

The Collaborative to Prevent Sports- Related and Sequelae in Youth

¾ , Co-founder, President & CEO of the Sports Legacy Institute ¾ Standing in for Lewis C. Howe, Mass. Dept of Public Health and CDC core injury grantee: • Lisa Allee, Medical Center • Linda Lacke, Mass. General Hospital

February 25, 2010 CDC webinar

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Where to Begin?

www.cdc.gov/ncipc/dvp/publcihealthmodel.jpg; http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4811a1.htm

1 Public Health Model and The Massachusetts Collaborative Program

• STEP 1: Identify the problem – Anecdotes, press/media, literature – Quantify the problem – DATA! (Does this matter? To whom?) ƒ Public databases – CDC, state health dept ƒ Others – hospital registries, costs, foundations

• Shortcut for STEP 2: Identify risk/protective factors, and STEP 3: Develop/ prevention strategies = Identify stakeholders, networks > PARTNERSHIPS!

• STEP 4. Assure Widespread Adoption – Again, partnerships!!!

Public Health Model and The Massachusetts Collaborative Program

• STEP 1: Identify the problem ¾ Sports concussions, especially pediatric , are a widespread problem

ƒ Concussions/(mild) TBI/etc. = enormously misunderstood by the public, sports organizations, and even some frontline medical staff ƒ Data, reports show that this type of injury is prevalent, debilitating, costly AND vastly under-reported ƒ Media, culture of professional sports emphasizes what is in fact mismanagement of the injury; youth sports emulate

2 Why Tackle Sports Concussions?

• CDC estimates 1.6 to 3.8 MM sports and recreation related concussions annually

• TBI task force identified sports concussions as an action issue in 2007 report •http://www.mass.gov/Eeohhs2/docs/dph/com_health/injury/tbi_case _prevention.pdf

• Prevention = cost containment

• Growing evidence that repetitive head injuries can lead to a neurodegenerative disease called Chronic Traumatic Encephalopathy, or CTE

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Emergency Department Discharge Rates for Sports-related1 Traumatic Brain Injuries, MA Residents, FY2008 0

0 400. 0 323. 6 291.6 300.0 200.0 100.0 44.9 28.9 14.3 5.3 1.5 0.0 Rate per 100,0 per Rate

0-9 65+ 10-14 15-19 20-24 25-44 45-64 Age Groups (in years)

MA youth between the ages of 10 and 19 accounted for 77% of all sports-related TBIs treated in the ED (N=2,655).

Source: MA Emergency Department Discharge Database, MA Division of Health Care Finance and Policy. 1 Includes only cases with E-codes (E886.0, E917.0, E917.5); other sports-related cases not receiving these codes are not included.

3 Percentage of Massachusetts Students1 Reporting Symptoms of a TBI2 While Playing with a Sports Team in the Past 12 months, (MA Youth Health Survey, 2009)

25 23.4 21.6 19. 2 20 18.3

14.2 14.5 15 Male Female 10 Total

Percentage of Students of Percentage 5

0 High School Middle School 1 Includes only students who played on a sports team in the past 12 months. 2 Reported they suffered a blow or jolt to head while playing with a sports team (during a game or practice) which caused them to get "knocked out", have memory problems, double or blurry vision, headaches or "pressure" in the head or nausea or vomiting.

Public Health Model and The Massachusetts Program

• Shortcut for STEP 2: Identify risk/protective factors, and STEP 3: Develop/test prevention strategies = PARTNERSHIPS! – Stakeholders/Target Groups: athletes/parents, youth sports organizations, schools, towns, BIA-MA/BIAA, injury prevention professionals – CDC injury coalition (MDPH, hospitals, advocacy groups, survivors), legislators, other youth groups (YMCA, Scouts)

– What’s been done before? ƒ Professional conferences – accessed by very specific groups ƒ Piecemeal training of coaches if organization chose to and had resources; no legislation or widespread/uniform regulations

4 Getting Our Team Together - Hospitals

• MassPINN “Trauma Center Subcommittee”

• American College of Surgeons Trauma Center verification requirement: trauma centers must participate in injury prevention (CD 18-2) and demonstrate collaboration/participation in national, regional, or state programs (CD 18-4).

• Meet quarterly following MassPINN meetings .

• Signature hospitals: MGH, Lahey, BMC, Children’s, Tufts/NEMC, UMass Med, BayState (teaching); now community hospitals joining…

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Getting our Team Together: Recruiting Star Power to “Move the Chains” • Used BIA to reach out to Chris Nowinski and Sports Legacy Institute • Dr. Cantu, who led MDPH’s TBI Task Force, co-founded SLI with Mr. Nowinski • Dr. Cantu sits on BIA-MA’s board • Mr. Nowinski on national BIA board • Used these connections to build support for state and national awareness effort

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5 Sports Legacy Institute

The Sports Legacy Institute was founded in 2007 by Dr. Robert Cantu and Chris Nowinski to “Solve the Sports Concussion Crisis.” SLI is a non-profit dedicated to study, treatment and prevention of concussions and the degenerative brain disease Chronic Traumatic Encephalopathy , or CTE .

Research Treatment

www. sportslegacy.org Education & Prevention

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Center for the Study of Traumatic Encephalopathy (CSTE)

In September, 2008, SLI partnered with School of Medicine to found the first ever research center dedicated to CTE and dedicated to finding a cure

Goals 1. Establishment of Brain Donation Registry • Current or retired athletes, with and without history of concussion, to agree to donate brain tissue following death. 2. Conduct Clinical Research • Examinations of retired athletes, including cognitive, mood, and neurological assessments, as well as brain MRI and spinal taps (to measure proteins in cerebrospinal fluid). Study longitudinally and examine brains following death. 3. Expansion of Brain Bank • Brain tissue repository for the examination of the underlying neuropathology associated with repetitive concussion in athletes. A

A. 65 yr old healthy control B C B. 45 year-old former NFL player with CTE C. 73 yr old boxer with dementia and CTE

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6 Public Health Model and The Massachusetts Collaborative Program

• Shortcut for STEP 2: Identify risk/protective factors, and STEP 3: Develop/test prevention strategies

– Interventions: ƒ Awareness/education – local: – CDC Heads Up kits! Expertly designed, multi-modal, free, accessible – Conferences, workshops, 1:1 - athletes, parents, clinicians, coaches

ƒ Awareness/education - national: – SLI, CSTE, BIAA, CDC – data, conferences, NFL, national media outlets, Congress! – Na tiona l medi a att enti on h as h ad maj or i mpact > t ri ckl e-dfftdown effect

ƒ MA legislation: Bill No. S.796 – Covers high school sports only, but easier to implement because of interscholastic regulations. – Focuses on awareness and return to play guidelines – Based on existing legislation in Washington, Oregon, and Texas – Potential cost is education – CDC online certification (free) could fill gap

The National Media is Behind This Issue

Indentify your media partner

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7 The CSTE Brain Donation Registry

The SLI/BU CSTE brain donation registry has identified athletes across the nation who support concussion education & awareness. They are looking for opportunities to make a difference

• (61) • (pic) • National Hockey League (6) • Joe DLDeLami illelleure • Keith P rimea u • Isaiah Kacyvenski • Noah Welch • Mike Haynes • Steve Heinze • Matt Birk • Ryan Vandenbussche • Kyle Turley • Pro Wrestling (25) • Frank Wycheck • • Bruce Laird • • Brent Boyd • Chris Nowinski • Zach Thomas • • Hunter Hillenmeyer • MllHllMolly Holly • Billy Ray Smith • Level Donors • Ken Gray • • Lofa Tatupu • Boxing Pro 135 • Micky Ward • NBA Amateur 140 • Paul Grant • Soccer • Malcolm Huckaby • Cindy Parlow Total 275

• As of Feb 2010 •15

MA Program kickoff, January 2009

• High-profile event at Lowell Devils AHL hockey game • Heads Up kit giveaway, autographs, more

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8 Public Health Model and The Massachusetts Collaborative Program

STEP 4. Assure Widespread Adoption > PARTNERSHIPS

– Hospitals/Medical Profession – provide patient-level and group education, advocacy support from medical societies, expert testimony at legislative hearing; Trauma network = coverage of state for distribution of CDC kits.

– More conferences & trainings offered by advocacy groups, youth sports organizations…and more groups requesting them!

– CDC ICPG coalition, MassPINN, mobilizes contacts to Mass. legislators at key points of legislative process

– Ongoing support from CDC throughout process

Moving Forward

• Continue Heads Up Kit educational campaign • Promote online coaches certification when available in 2010 • Increase education to primary care sites and emergency departments • IfltkithStMdiiIncrease referral networks with Sports Medicine groups • Continue to support legislation • Keep the issue in the media/identify spokespersons • Other ideas welcomed!

Please contact us with any questions or requests: SLI: Chris Nowinski [email protected] Mass. DPH: Lewis Howe [email protected], Holly Hackman [email protected]

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