Welcome to the ATHN Data Summit

Drawing more than 350 attendees and growing each year, the ATHN Data Summit provides a unique opportunity for professionals from the blood disorders community to meet, celebrate accomplishments, and work together to reach new heights. ATHN welcomes all ATHN-affiliated hemophilia treatment center (HTC) staff and our collaborating partners to participate.

At ATHN Data Summit 2019 we’re looking forward to sharing insights on how professionals in the blood disorders community are working together to advance research and improve care. Highlights include:

  • ATHN research progress and opportunities
  • Poster sessions with authors
  • Updates about quality improvement and surveillance initiatives
  • Launch of the Data Management Community of Practice
  • DREAM Award and CARE Award announcements
  • Industry consortium and community partner exhibits

Who Attends

The ATHN Data Summit is a unique opportunity for our professional community members to come together and share information and ideas face to face. All ATHN-affiliated HTC staff and collaborating partners are invited to join us. There is no registration fee.


ATHN Data Summit 2019 Agenda

General Session

9:00 a.m. – 12:00 p.m. Registration
9:00 a.m. – 12:00 p.m. ATHN Industry Consortium and Community Partner Exhibits
11:00 a.m. – 12:00 p.m. Welcome Reception & Lunch
12:00 p.m. – 12:30 p.m.

Opening Session

  • Welcome & Introductions
  • State of ATHN
12:30 p.m. – 1:45 p.m.

Hemophilia Research

  • ATHN 7: Hemophilia Natural History Study
  • Clinical Use of Non-Factor Products
  • ATHN 8: PUPs Matter Study
  • Non-Hemostatic Roles of Factor VIII
1:45 p.m. – 2:00 p.m. Break
2:00 p.m. – 2:45 p.m.

Von Willebrand Disease Research

  • ATHN 9: Severe VWD Natural History Study
  • Findings from the Zimmerman Project
2:45 p.m. – 3:45 p.m.

Partner Lightning Talks

  • HTC Regional Spotlight
  • HRSA National Hemophilia Program Update
  • NHPCC Update
  • Hemophilia Alliance Partner Update
  • CDC Community Counts Update
  • CDC Blood Disorders Update
3:45 p.m. – 4:15 p.m. ATHN Poster Session
3:45 p.m. – 4:15 p.m. ATHN Industry Consortium and Community Partner Exhibits
4:15 p.m. – 5:45 p.m.

Breakout Tracks

  • Track One:
    The Evolution of ATHN’s Research Model
  • Track Two:
    Data Management Community of Practice and ATHN Tools Training
6:30 p.m. – 9:00 p.m.

Networking Reception and Dinner

7:00 a.m. – 8:00 a.m. Breakfast Buffet
7:00 a.m. – 8:00 a.m. ATHN Industry Consortium and Community Partner Exhibits
8:00 a.m. – 8:30 a.m.

ATHN Informatics Update

  • Promoting Data Quality and Capture
8:30 a.m. – 9:15 a.m. DREAM Award Results – Your Data at Work
9:15 a.m. – 10:00 a.m.

Rare Coagulation Disorders

  • Clinical Considerations – Why Genetic Testing Matters
  • ATHN 10: Rare Coagulation Disorders Project
10:00 a.m. – 10:30 a.m. ATHN Poster Session
10:00 a.m. – 10:30 a.m. ATHN Industry Consortium and Community Partner Exhibits
10:30 a.m. – 11:30 a.m.

Thrombosis Research Results and Challenges

  • ATHN 4: Transition of Care for Patients with VTE Project Results
  • Outcomes Following Pediatric Thrombosis
11:30 a.m. – 12:45 p.m.

Preparing for Gene Therapy

  • Patient Counseling and Monitoring
  • ATHN 14: Hemophilia Gene Therapy Outcomes Study
12:45 p.m. – 1:00. p.m. A Look to the Future & Closing

Thank You

We are grateful to the ATHN Industry Consortium and Community Partners for their generous contributions and support.


ATHN Data Summit 2019 Hotel Information

Swissôtel Chicago
323 E. Wacker Drive
Chicago, IL 60601

Tel: (312) 565-0565
Fax: (312) 268-8202

Make Your Reservation by September 24 and SAVE!
Book your room by September 24, 2019 to secure the special conference rate of $229 per night (single or double occupancy). Make your reservation online using the ATHN Data Summit 2019 reservation link or call 1-888-73 SWISS (79477) and mention ATHN to receive the conference rate. Reservations received after September 24 will be offered at the lowest available rate and will be subject to availability.

Swissôtel Chicago, designed by renowned Chicago architect Harry Weese, is an award-winning, four-diamond, all-glass triangular luxury hotel. Ideally situated at the confluence of the Chicago River and Lake Michigan and just steps away from exclusive shopping on The Magnificent Mile in downtown Chicago, Swissôtel Chicago offers an exclusive setting with fabulous wrap-around views from Navy Pier to Millennium Park at one of the city’s most prestigious addresses.

Swissôtel Chicago offers 661 tastefully decorated and generously oversized luxurious non-smoking rooms and suites, with a full range of exclusive amenities. Savor a delectable breakfast, lunch, or dinner at The Palm, our acclaimed restaurant, or enjoy small plates and cocktails in our lobby lounge, Amuse. Take your workout to a new level at the Penthouse Fitness Centre, which boasts panoramic views from the 43rd floor.

From the newly renovated lobby to the plush interior of our Presidential Suite, Swissôtel Chicago is graced with contemporary Swiss elegance and is truly unique among downtown Chicago accommodations. The hotel is conveniently located:

  • Just steps from The Magnificent Mile in downtown Chicago
  • A short walk to the city’s financial, business, and entertainment districts
  • Minutes from The Art Institute of Chicago, The Field Museum, and Shedd Aquarium
  • Within 20 miles of Chicago’s major airports: O’Hare International and Midway

Swissôtel Chicago offers the following amenities:

  • 24-hour valet parking (fee applies)
  • Two on-site restaurants and lounge
  • Upscale Swissôffice Business Centre
  • 24-hour room service and express checkout
  • 24-hour Grab & Go gift shop

Visit Swissôtel Chicago to learn more.

The Swissôtel Chicago is located at 323 E. Wacker Drive in downtown Chicago (one block east of the Hyatt Regency Hotel).

To/From O’Hare:

  • Shared Ride Shuttle – The “Go Airport Express Shuttle” trip may take up to 1.5 hours depending on the number of other hotel stops. The cost is approximately $35 for an individual. Discounts are offered for multiple passengers traveling to/from the same location. From the airport to the hotel, no reservation is needed. Shuttles leave O’Hare for downtown Chicago hotels and businesses every 10 to 15 minutes from terminals 1E, 3F, 2D, and 5E. Shuttle service begins at 4:00 a.m. for hotels. The ticket sales counter is located by baggage claim at the airport. For the return trip back to the airport, reservations are required at least 4 hours in advance. Contact Airport Express for reservations or more information.
  • Taxi – A cab takes about 45 minutes from O’Hare to the hotel and the cost is around $40 to $50.
  • Public Transportation – The CTA Blue Line takes about 60 minutes and the cost is $5 one way. The nearest Blue Line stop is located at Clark and Lake St. in the Thompson Center.

To/From Midway:

  • Shared Ride Shuttle – The “Go Airport Express Shuttle” trip may take up to 1.5 hours depending on the number of other hotel stops. The cost is approximately $28 for an individual. Discounts are offered for multiple passengers traveling to/from the same location. From the airport to the hotel, no reservation is needed. GO Airport Express ticket counter and loading zone is located at Door 3, lower level across from baggage claim. Shuttles depart the airport regularly. For the return trip back to the airport, reservations are required at least 4 hours in advance. Contact Airport Express for reservations or more information.
  • Taxi – A cab takes about 30 minutes and the cost is around $30 to $40.
  • Public Transportation – The CTA Orange Line Train takes about 45 minutes and the cost is $2.25 one way. The nearest Orange Line stop to the hotel is located at State and Lake St.

Sedan Service
For private sedan service, call the Swissôtel Concierge at (312) 268-8280 or email Concierge.Chicago@swissotel.com.

The Magnificent Mile website provides all the information you need to plan an enjoyable Chicago experience. Discover restaurants, seasonal events, culture, entertainment, and world-class shopping on Michigan Avenue.


Please note: The call for abstract submissions for ATHN Data Summit 2019 is closed.