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 bleeding and clotting disorders community to meet and reconnect, share ideas, celebrate accomplishments, and work together to reach new heights. ATHN-affiliated hemophilia treatment centers (HTCs), along with community, government, and industry partners are all encouraged to participate.

Join us for ATHN Data Summit 2018, October 25-26, 2018 at the Swissôtel Chicago in Chicago, IL.

Register Now

At ATHN Data Summit 2018 we’re looking forward to sharing insights on how professionals in the bleeding disorders community are working together to transform research. Some of the highlights include:

  • ATHN research updates
  • Poster sessions with authors
  • Updates about quality improvement initiatives at the NHPCC
  • ATHN Leadership Awards, 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, as well as community, government, and industry partners are invited to join us. There is no registration fee.


ATHN Data Summit 2018 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
10:30 a.m. – 11:30 a.m. ATHN Poster Session with Authors
11:00 a.m. – 12:00 p.m. Welcome Reception & Lunch
12:00 p.m. – 12:30 p.m.

Opening Session

  • Welcome & Introductions
    Ellis Neufeld, MD, Chair, ATHN Board of Directors
  • State of ATHN
    Crystal Watson, ATHN President & CEO
12:30 p.m. – 1:45 p.m.

Hemophilia Natural History Studies

  • ATHN 8: PUPs Matter Study
  • PedNet Haemophilia Registry
  • CDC Laboratory Services
  • ATHN 7: Hemophilia Natural History Study
1:45 p.m. – 2:00 p.m. Break
2:00 p.m. – 3:00 p.m.

Von Willebrand Disease Research and Laboratory Services

  • ATHN 9: Severe VWD Natural History Study
  • VWD Laboratory Assays
  • The Biology of VWF/FVIII Complex
3:00 p.m. – 3:30 p.m. ATHN Poster Session with Authors
3:00 p.m. – 3:30 p.m. ATHN Industry Consortium and Community Partner Exhibits
3:30 p.m. – 4:30 p.m.

Government and Partner Updates

  • HRSA National Hemophilia Program Update
  • NHPCC Update
  • Hemophilia Alliance Partner Update
  • CDC Community Counts Update
  • Community Counts Inhibitor Data
4:30 p.m. – 4:45 p.m. Break
4:45 p.m. – 5:45 p.m.

Breakout Tracks

  • Track One:
    ATHN Research Services and Results
  • Track Two:
    ATHN Systems Training - New Users (<2 years)
    (Regional Core Center and HTC Staff Only)
  • Track Three:
    ATHN Systems Training - Advanced Users (>2 years)
    (Regional Core Center and HTC Staff Only)
6:30 p.m. – 9:00 p.m.

Networking Reception and Dinner
Radisson Blu Aqua Hotel
221 N. Columbus Drive, Chicago

ATHN Leadership Awards Presentation

  • Lusher-Shapiro Award
  • Trish Dominic Award
7:00 a.m. – 8:00 a.m. ATHN Industry Consortium and Community Partner Exhibits
7:00 a.m. – 8:00 a.m. Breakfast Buffet
8:00 a.m. – 9:00 a.m.

Thrombosis Research Updates

  • Highlights from ATHN 4: Transition of Care for Patients with VTE
  • DREAM Award – The Use of DOACs in Pediatric Thrombosis Patients
  • An ATHNdataset Project – Focus on Antithrombin
9:00 a.m. – 9:30 a.m.

Spotlight on ATHN 10: Rare Coagulation Disorders Project

  • Leveraging the ATHNdataset to Document Rare Disorders
  • Genetic Testing for Rare Disorders
9:30 a.m. – 10:00 a.m. Break
9:30 a.m. – 10:00 a.m. ATHN Industry Consortium and Community Partner Exhibits
9:30 a.m. – 10:00 a.m. ATHN Poster Session with Authors
10:00 a.m. – 10:30 a.m.

ATHN Informatics Update

  • ATHN’s Commitment to Data Quality
  • Informatics Priorities
10:30 a.m. – 11:45 a.m.

Advances in Gene Therapy

  • Overview of Gene Therapy for Hemophilia
  • ATHN 14: Gene Therapy Outcomes Study
  • Overview of Gene Therapy Treatment Pipeline
11:45 a.m. – 12:00 p.m. Break
12:00 p.m. – 12:30 p.m.

ATHN Awards Presentation and Project Results

  • ATHN Leadership Awards
  • DREAM Award
  • CARE Award
12:30 p.m. – 1:00. p.m.

A Look to the Future & Closing


Thank You

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


Hotel Information

Swissôtel Chicago
323 E. Wacker Drive
Chicago, IL 60601

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

Make your reservations by calling 1-888-73 SWISS. Reservations received after October 9 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. <<link: http://www.airportexpress.com/reservations>>
  • 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.

A block of rooms is also available at the Hyatt Regency Hotel, 151 East Wacker Drive, Chicago, IL 60601. Guests can make reservations online until October 11 by going to https://book.passkey.com/go/ATHN2018 or by calling 1-888-421-1442 and referring to ATHN, or the ATHN Data Summit 2018 Room Block. Reservations received after October 11 will be offered at the lowest available rate and will be subject to availability.


We look forward to seeing you in Chicago.
Register now for ATHN Data Summit 2018!

Past Data Summit Presentations Are Available
To review presentations from past data summit events, visit our Document Library and search Data Summit 2017 presentations.