ATHN Data Summit 2016

ATHN Data Summit 2016

Celebration of Progress – ATHN 10th Anniversary

Novo Nordisk

As we commemorate ATHN’s 10th anniversary at this year’s Data Summit, we are excited to celebrate the progress we’ve made together. Over the past 10 years, ATHN has become an organization that brings HTC teams, investigators, federal partners, and funders together to secure data, advance knowledge, and transform care. At the meeting, the growth we’ve achieved together will become clear as we present updates and results on many of ATHN’s projects.

Who Should Attend

The ATHN Data Summit provides a unique opportunity for the HTC team to meet colleagues, share ideas, celebrate accomplishments, and work together to attain new heights. ATHN-affiliated HTCs and community, government, and industry partners are all invited to attend. There will be something of interest for:

  • ATHN Affiliate medical directors and physicians, pediatric and adult hematologists
  • Nurse coordinators
  • Clinical team members (nurses, social workers, physical therapists, pharmacists, genetic counselors, etc.)
  • Data managers and study coordinators
  • HTC regional leadership (scientific/administrative)
  • Government partners
  • Industry partners


Join us in Chicago, October 6–7, 2016.
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Registration and a welcome lunch reception begin at 11:00 a.m. on Thursday, October 6, followed by the opening session at 1:00 p.m. The robust agenda concludes at 1:00 p.m. on Friday, October 7. In addition, several ATHN committees will meet in the morning of October 6. Special pre-meeting educational sessions, committees, and working group meetings occur on Wednesday afternoon October 5 and Thursday morning.

Registration Fee

There is no registration fee for ATHN Affiliates, government partners, community liaisons, and Industry Consortium members attending the ATHN Data Summit.


Hyatt Regency Chicago

151 East Wacker Drive
Chicago, IL 60601

ATHN Data Summit 2016 Schedule
Celebration of Progress – ATHN 10th Anniversary
Pre-Conference Meetings
October 5, 2016

1:00 p.m. - 4:00 p.m.

National Hemophilia Program Coordinating Center (NHPCC) Advisory Group (Medical Director: Amy Shapiro, MD) (Invitation only)

3:00 p.m. - 4:15 p.m.

NHPCC Focus Groups for Pilot Site Coaches (Invitation only)

4:15 p.m. - 6:15 p.m.

NHPCC Focus Groups for Pilot Site Teams (Invitation only)


October 6, 2016

8:00 a.m. - 11:00 a.m.

Community Counts Science and Administrative Committees (Invitation only)

8:00 a.m. - 12:00 p.m.

The NHPCC Quality Improvement Pilot Program: Reflections and Lessons Learned
(Open to all HTC staff, including all pilot sites and coaches)

9:00 a.m. - 10:45 a.m.

ATHN Committee Meetings (Invitation only)

  • Privacy, Security, and Data Access Committee
  • Thrombosis Committee

11:00 a.m. - 12:15 p.m.

ATHN Committee Meetings (Invitation only)

  • NHPCC Transition Work Group
  • Finance Committee
  • Communications Committee
  • Technology Committee
  • ATHN 2 Steering Committee

11:00 a.m. - 12:00 p.m.

ATHN 101: An Overview of ATHN Projects
(Specially designed for new HTC staff, first-time Data Summit attendees, and those interested in a refresher)

9:00 a.m. - 1:00 p.m.


10:00 a.m. - 1:00 p.m.

ATHN Poster Session

11:00 a.m. - 1:00 p.m.

Welcome Reception and Lunch

10:00 a.m. - 1:00 p.m.

ATHN Industry Consortium and Community Partner Exhibits

1:00 p.m. - 1:10 p.m.

Opening Session – Welcome and Introductions

1:10 p.m. - 1:30 p.m.

State of ATHN — Celebrating 10 Years!

1:30 p.m. - 2:15 p.m.

The ATHNdataset – Building from Where We Started

  • Understanding More About Females with Bleeding Disorders (Co-PIs: Kristina Haley, MD and Robert Sidonio, MD)
  • Use of Orthopedic Surgical Interventions in Persons with Hemophilia (PI: Tyler Buckner, MD MSc)
  • Diagnosis of Persons with VWD (Co-PIs: Megan Sampson, MD and John Fargo, DO)
  • The DREAM Awards (Review Committee Chair: Sarah O’Brien, MD)

2:15 p.m. - 2:30 p.m.


2:30 p.m. - 4:00 p.m.

Strengthening Our Data Over the Years

  • ATHN Systems: Clinical Manager and Study Manager
  • ATHN Data Matters
  • Community Counts – A Look at Inhibitors in the Registry for Bleeding Disorders (PI: Marilyn Manco-Johnson, MD)
  • ATHN 1 – A Cross-Sectional Analysis of Cardiovascular Disease in the Hemophilia Population – Findings and Results  (PI for Renal Extension: Sumi Sood, MD)

4:00 p.m. - 4:15 p.m.


4:15 p.m. - 5:30 p.m.

Putting ATHN’s Strategy, “Securing Data, Advancing Knowledge, and Transforming Care” Into Action

(Select one track)

Track One:
ATHN Systems at Your HTC

  • ATHN Infrastructure and ATHN Data Matters
  • Using ATHN Systems to Collect National Metrics
For Data Managers and Study Coordinators

Track Two:
Tapping into the Data and Sample Repositories to Initiate Research Projects

  • ATHNdataset
  • Community Counts
  • My Life, Our Future
  • ATHN Question Library
For Researchers

Track Three:
Transition from Pediatric to Adult Care: Forum for Sharing Strategies and Best Practices

For Clinicians

6:30 p.m. - 8:30 p.m.

ATHN 10th Anniversary Networking Reception and Dinner

Presentation of ATHN Leadership Awards: Lusher-Shapiro Award and Trish Dominic Award
The Crystal Gardens, Navy Pier
Sponsored by Novo Nordisk

October 7, 2016

7:00 a.m. - 9:00 a.m.

ATHN Industry Consortium and Community Partner Exhibits

7:00 a.m. - 9:00 a.m.

ATHN Poster Session

7:00 a.m. - 9:00 a.m.

Breakfast Buffet

8:00 a.m. - 9:15 a.m.

Breakfast Breakouts: Continuing Our Work Together

  • BB1: Focus on Rare Bleeding Disorders (Open to all HTC staff)
  • BB2: ATHN 2 for Investigator Teams – Factor Switching Study
  • BB3: ATHN Systems Training (Open to all HTC staff)
  • BB4: Making the Most of Community Counts Data (Open to all HTC staff)
  • BB5: ANCC Hemostasis Nurse Certification – Demystifying the Process (Open to all HTC nurses)
  • BB6: ATHN 4 for Investigator Teams – Transitioning Care for Patients with Venous Thromboembolism
  • BB7: My Life, Our Future – Accessing Carrier Testing and What It Means to Your Patients and Their Families (Open to all HTC staff)

9:15 a.m. - 9:30 a.m.


9:30 a.m. - 10:30 a.m.

National Hemophilia Program Coordinating Center: Quality Improvement Initiatives

  • National Strategy
  • Quality Metrics
  • Building a Network of Coaches to Increase QI Capacity
  • Implementing QI at the HTC level
  • Moving Forward

10:30 a.m. - 11:00 a.m.

ATHN Poster Session and Break
ATHN Industry Consortium and Community Partner Exhibits

11:00 a.m. - 12:30 p.m.

ATHN Today – Project Progress Updates

  • ATHN 2 –Factor Switching Study (PI: Ellis Neufeld, MD)
  • ATHN 4 – Transition of Care for VTE Patients (Co-PIs: Madhvi Rajpurkar, MD and Maria De Sancho, MD MSc)
  • ATHN 5 – Hepatitis C Treatment Outcomes (PI: Christopher Walsh, MD)
  • My Life, Our Future – Beyond the Hemophilia Gene (PI: Barbara Konkle, MD)

12:30 p.m. - 12:50 p.m.

A Look to the Future for ATHN and You!

12:50 p.m. - 1:00 p.m.

In Closing

Thank You

We appreciate the generous contributions of the ATHN Industry Consortium.

Founding Visionary Partner

Novo Nordisk

Visionary Partners


Industry Leader


Industry Supporters

CSL Behring, Pfizer, Bayer Healthcare, Emergent Biosolutions

Industry Associate


We look forward to welcoming you to the 2016 ATHN Data Summit.

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ATHN Data Summit 2016 Hotel Accommodations

Hyatt Regency Chicago (Data Summit "Headquarters")
Save When You Book Your Reservation by September 13th

We have reserved a block of rooms at the Hyatt Regency Chicago at a special conference rate of $219 per night for ATHN Data Summit 2016 attendees. Reservations must be booked by September 13, 2016 to receive the conference rate.

Make your reservation online at Hyatt Reservations, or call the Hyatt Regency Chicago reservation line at 1-888-421-1442 (toll-free) and identify yourself as an attendee of the ATHN Data Summit 2016 when making your reservation.

Radisson Blu Aqua Hotel, Chicago (Alternate Housing)

For reservations at the Radisson Blu Aqua Hotel, Chicago, 221 N. Columbus Drive, Chicago, IL at the conference rate of $249, click on this link: ATHN Data Summit 2016 Booking Link, Promotional Code: ATHN16. Or call the Radisson Blu reservations toll free line at 1-800-333-3333 and mention ATHN when making your reservation. To receive the conference rate at the Radisson Blu, reservations must be booked by September 16, 2016. Reservations received after the Reservation Due Date will be subject to space availability and at prevailing room rates.

Hyatt Regency Location

The Hyatt Regency Chicago is located 1 block east of Michigan Avenue at 151 East Wacker Drive, Chicago, IL, phone 312-565-1234. Connected to Illinois Center, this four-diamond downtown Chicago hotel is ideally situated within the Magnificent Mile.


The Hyatt Regency Chicago is located at 151 East Wacker Drive, 18 miles from O’Hare International Airport (45 minutes), and 12 miles from Midway International Airport (35 minutes).

From O'Hare International Airport: Take Kennedy Expressway (I-90/94) east to Ohio St. exit. Proceed on Ohio to State St. and turn right. Turn left at Wacker Drive. Our downtown Chicago, Illinois hotel will be down approximately 2 blocks on the right.

From Midway Airport: Take Cicero Ave North to Stevenson Expressway (I-55) North. Exit at Dan Ryan Expressway (I-90/94) West. Exit at Washington St. and proceed east to Michigan Ave. Turn left. Proceed north to Wacker Drive. Turn right. Our downtown Chicago, Illinois hotel is 1 block on right

Parking at the Hyatt Regency Chicago
  • Valet: $65.00/Valet

  • 0–3 Hours: $37.00
  • 3–6 Hours: $47.00
  • 6–24 Hours: $65.00

For additional parking options, go to:


From O’Hare International Airport: (18 miles)

Go Airport Express: From lower level baggage claim area. Transportation service runs daily. Visit for more information, costs, and reservations.

Private Limo Services can be arranged through the Hyatt Regency Chicago Concierge at 312-565-1234, ext. 4511.

Taxi: Approx $30.00 – $40.00

L Train: $5 per person to and from O'Hare International Airport. Pick-up below baggage claim area (follow signs to C.T.A.). Take "L-Train" to Clark/Lake stop (approx. 7 blocks from hotel). Walk East on Lake to Stetson St, turn left Stetson St and walk 1 block to the hotel. Note: This method is not recommended if guest has more than one bag, as there are numerous escalators and turnstiles. Guest can take a cab or walk from Clark/Lake stop.

From Midway Airport: (12 miles)

Go Airport Express: From lower baggage claim area. Transportation service runs daily. Visit for more information, costs, and reservations.

Taxi: Approx $30.00 – $40.00

L Train: $2.25 per person to and from Midway Airport. From the airport take the Orange Line to the State and Lake Street stop. Walk 1 block north to Wacker. Take a right on Wacker and the hotel is approximately 3 blocks.

From Amtrak (Union Station): 1 1/2 miles – taxi approx $8.00

From Greyhound Terminal: 2 1/2 miles – taxi approx $10.00

From C & NW Railroad: Taxi approx $5.00

Local Attractions, Shopping, and Dining

Immerse yourself in Chicago blues, jazz, shopping, Grant and Millennium Parks, Buckingham Fountain, the Theatre District, Lake Michigan beaches, Lincoln Park Zoo, world-famous museums, Navy Pier, Michigan Avenue, as well as Wrigley Field, and U.S. Cellular Field. View full listing of local attractions.

Chicago’s Magnificent Mile is the great Chicago shopping experience with an abundance and variety of boutiques and stores to spark every interest, meet every need, and delight every visitor. Chicago is also home to the finest restaurants, offering irresistible cuisine from deep-dish pizza to escargots bourguignon. Discover Chicago’s shopping and restaurants.

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