ATHN Data Summit 2014

ATHN Data Summit 2014

This year's 7th annual meeting is the forum to come together and help guide the future health and well being of individuals with bleeding and clotting disorders across the U.S.

Join us in Chicago November 6-7, 2014. Register today.


November 6-7, 2014

A welcome lunch reception and registration begin at 11:00 a.m. on Thursday, November 6th followed by the opening session at 1:00 p.m. The robust agenda concludes at 12:45 pm on Friday, November 7th. Several ATHN committees will meet the morning of November 6th.


221 N. Columbus Drive

Chicago, IL 60601
1-312-565-5258 or 1-312-565-5BLU (main)
1-312-565-0258 (fax)

Reservations: ATHN Data Summit
Or call the Radisson Blu reservations line (1-800-333-3333) and mention the ATHN Data Summit dates of November 6-7, 2014 and/or "ATHN DATA SUMMIT."

Pre-conference meetings

November 5, 2014
1:00 pm - 5:00 pm

National Hemophilia Program Coordinating Center (NHPCC) Advisory Group (invitation only)

November 6, 2014
8:00 am - 11:00 am

Regional Leadership Meeting (CDC Surveillance Science and Administrative Committee; NHPCC Steering Committee) (invitation only)

10:00 am – 1:00 pm

ATHN Industry Consortium and Community Partner Exhibits

11:00 am – 12:00 pm

ATHN 101: Gain a better understanding of ATHN and our Projects
(Becky Dudley, LSW, ATHN Associate Director)

11:00 am – 1:00 pm

Registration and Lunch Welcome Reception

11:00 am – 12:15 pm

ATHN Committees (invitation only)
Rare Bleeding Disorders Working Group
Community Relations and Communications Committee
Technology Committee
NHPCC 340B Working Group
Data Quality Committee
NHPCC Genetics Working Group
Finance Committee

November 6th
1:00 pm -1:10 pm

Opening Session ATHN Data Summit 2014
Welcome and Introductions (Steve Pipe, MD, Chair, ATHN Board of Directors)

1:10 pm – 2:00 pm

The State of ATHN
(Diane Aschman, ATHN President & CEO)
2015 and Beyond
(Steve Pipe, MD, Chair)

2:00 pm - 2:45 pm

ATHN Assets for the Community
The ATHN Infrastructure
The ATHNdataset

2:45 pm - 3:00 pm


3:00 pm - 4:00 pm

Community Counts: Public Health Surveillance for Bleeding Disorders
(Moderator, Becky Dudley, LSW)
Accomplishments to date
Best Practices

4:00 pm - 4:15 pm


4:15 pm - 5:30 pm Tracks

Track One for Researchers: Advancing Knowledge through Investigator Initiated Research
(Moderator, Christopher Walsh, MD)
Young Investigator DREAM Award

Track Two for Data Managers: Securing Data for Public Health Surveillance using Study Manager
(Crystal Watson, ATHN Director of Operations)
Registry Forms
Mortality Reporting
Specimen Forms

Track Three for Clinicians: Transforming Care using State-of-the-Art Genetic Services
Develop a Pedigree to Target at Risk Individuals

(Michele Alabek, MS, CGC)
Providing Access to Free Genetic Testing
(Sarah Ruuska, MPH)
Educating Families
(Regina Butler, RN, Recipient, NHPCC Project of National Significance)

6:30 pm - 9:00 pm

ATHN Networking Reception

November 7th
7:00 am – 9:00 am

ATHN Industry Consortium and Community Partner Exhibits

7:00 am - 8:30 am

Breakfast Buffet

7:30 am – 8:45 am

Breakfast Breakouts
BB1 – Cardiovascular Study Group (Investigator Teams Only)
BB2 – APProCH Study Group (Investigator Team Only)
(Steve Pipe, MD, PI)
BB3 - Rare Disorders Work Group
(Amy Shapiro, MD)
BB4 - Thrombosis Work Group
BB5 - My Life Our Future Study – Preparing for Carrier Testing (Participating Sites Only)
(Sarah Ruuska, MPH, Study Coordinator)
BB6 - My Life Our Future – Start-up (Interested but non-participating Sites)
(Cynthia Branch, ATHN Contracts Manager)
BB7 – Telemedicine
(Roshni Kulkarni, MD, Recipient, NHPCC Project of National Significance)
BB8 – Running Your HDS Report Using e-Web Reports
(Alan Shier, ATHN Community Support Leader)

8:45 am – 9:00 am


9:00 am – 10:00 am

Making the Best Care Even Better: the National Hemophilia Program Coordinating Center in Action
(Moderator: Ann Forsberg, ATHN Associate Director)
Care of Minority Populations
Transition Services
340B Pharmacy Services

(Laurel McKernan, MSN, RN)

10:00 am - 10:40 am

Quality Improvement: Which Measures? What Data?
National Metrics

(Nathan Hagstrom, MD, WG Chair)
Healthy People 2020
(Kathryn McLaughlin, HRSA)

10:40 am - 10:55 pm


10:55 am – 11:35 am

Future Directions: Securing Data
Ensuring Data Quality
Rare Disorders
(Study Group Report)
IPSG Prophylaxis Survey (Study Group Report)

11:35 pm – 12:30 pm

Future Directions: Advancing Knowledge
Using the ATHNdataset
Pharmacokinetic Dosing
(Study Group Report)
My Life Our Future (Study Group Report)

12:30 pm – 12:45 pm

Future Directions: Transforming Care

12:45 pm – 1:00 pm

Affiliate Driven Initiatives: Our Path to Tomorrow
(Steve Pipe, MD)

Who Should Attend

The ATHN Data Summit provides a unique opportunity for the HTC team to meet colleagues, share ideas and work together toward the development of a secure national health information infrastructure and dataset. The ATHN Data Summit 2014 is open to all HTCs – both ATHN Affiliates and non-Affiliates. We encourage team participation. Attendees will include:

  • Principal Investigator / Alternate PI of ATHN Affiliates
  • Medical directors
  • Nurse coordinators
  • Clinical team members (nurses, social workers, physical therapists, pharmacists, genetic counselors, etc.)
  • Data managers
  • HTC Regional leadership (Scientific / Administrative)
  • Non-HTC thrombosis center team members
  • Government partners

Registration Fee

There is no registration fee for the ATHN Data Summit.

Acknowledgement and Thank You to Industry Consortium

We appreciate the generous contributions of the ATHN Industry Consortium.

Visionary Partners

Industry Supporters

Biogen Idec, CSL Behring and Pfizer

We welcome your involvement and hope you will join us for the 7th Annual ATHN Data Summit. Register Now.

Radisson Blu Aqua Hotel Accommodations

Make your reservations before October 13th and SAVE

221 N. Columbus Drive

Chicago, IL 60601
1-312-565-5258 or 1-312-565-5BLU (main)
1-312-565-0258 (fax)

Reservations: ATHN Data Summit
Or call the Radisson Blu reservations line (1-800-333-3333) and mention the ATHN Data Summit dates of November 6-7, 2014 and/or "ATHN DATA SUMMIT."

Welcome to the Radisson Blu Aqua Hotel

Meet Chicago's Superior Landmark

Welcome to an architectural marvel built for the 21st century. Designed by the acclaimed Jeanne Gang of Studio Gang Architects, The Aqua Tower soars high above Chicago's picturesque lakeshore, with breathtaking views across the city, park and historic Lake Michigan.

In addition to its enviable location and iconic design, the hotel is just a short ride from Chicago's Union Station, Chicago O'Hare International Airport is 18 miles away, and the Chicago Midway Airport is only 12 miles away. Also close by are Chicago's world-famous galleries and North Michigan Avenue with its Magnificent Mile of luxury shopping and cuisine. Cultured comforts have never been so convenient.

You're moments from everywhere:

  • Millennium Park – 0.1 mile
  • The Chicago Lakefront – 0.1 mile
  • North Michigan Avenue – 0.15 mile
  • Financial District – 0.8 mile
  • Chicago's Navy Pier – 1.4 miles
  • Chicago's Union Station – 1.8 miles
  • McCormick Place – 4.5 miles

Directions and Transportation

The Radisson Blu Aqua Hotel is located at 221 N. Columbus Drive (less than one block from the Hyatt Regency Hotel).

Driving from O'Hare Airport and the northwest suburbs: Travel time from O'Hare is 30 to 40 minutes (approximate, non-rush hour). Follow 90 East into downtown Chicago. Take the Ohio Street exit, and follow Ohio Street 1 1/4 miles to Michigan Avenue. Turn right on Michigan, and proceed to Randolph St. Turn left onto E. Randolph St. Veer slightly right to stay on E. Randolph St. (0.1 mi). Turn left onto N. Columbus Drive. The Radisson Blu will be on the right (east side).

Driving from Midway Airport, the southwest suburbs, or Lake Shore Drive from the south: Travel time from Midway is 20 to 30 minutes. Travel east on I-55 and merge with Lake Shore Drive North. Take the third exit-Monroe Street-and follow it two blocks to Michigan Avenue. Turn right on Michigan and proceed to Randolph Street. Turn right onto E. Randolph St. Veer slightly right to stay on E. Randolph St. (0.1 mi). Turn left onto N. Columbus Drive. The Radisson Blu will be on the right (east side).

Public Transportation from O'Hare and Midway:Detailed information on public transportation from O'Hare or Midway to downtown can be found at

From O'Hare, take the Blue Line to Clark and Lake. Take escalators to street level. Walk South on Clark one block to Randolph and turn left on Randolph. Walk east toward the lake approximately 6 blocks to Columbus Drive (notice Millennium Park on your right). When you turn left on Columbus Drive, you will see the hotel on the right side of Columbus.

From Midway Airport, take the Orange Line to Randolph & Wabash. Walk east toward the lake approximately 3 blocks to Columbus Drive (notice Millennium Park on your right). When you turn left on Columbus Drive, you will see the hotel on the right side of Columbus.

If you prefer not to walk from either train stop, a taxi will cost about 5 dollars to the Radisson Blu.

GO Airport Express Shuttles O'Hare (ORD) Airport: Shuttles leave O'Hare airport for downtown Chicago hotels and businesses every 10 to 15 minutes from terminals 1E, 2E, 3E, and 5E. You do not need a reservation if you are leaving O'Hare for downtown. Reservations are required if you are traveling to the airport. Shuttle service begins at 4:00 a.m. for hotels. O'Hare rate to downtown – One-way: $31.00 Roundtrip: $55.00

Midway (MDW) Airport: Airport share ride shuttles leave Midway going to all hotels in downtown Chicago every 15 minutes. GO Airport Express ticket counter and loading zone is located at Door 3, lower level across from baggage claim. Midway rate to downtown – One-way: $26.00 or Roundtrip: $46.00

Discounts are offered for multiple passengers traveling to/from the same location. Please refer to company's website for additional information or call 1-888-284-3826.

Reservations are required for return trips to the airport. Options for pick-up times will be 25 & 55 after the hour.

Taxi fare from O'Hare to the Radisson is approximately $47 - $54; from Midway the fare is from $33 - $40.

Private Car Service: The hotel concierge can arrange sedan or limousine service to and from either airport.


  • Self-parking is available in the ramp directly beneath the hotel (follow signage to the hotel lobby).
  • There are two parking ramp entrances; one on the South and one on the North side of the hotel directly off Columbus Drive.
  • Self-parking is $47 per day; it does not allow in and out privileges
  • Valet parking is available 24 hours for only $61 per day with in and out privileges

Radisson Blu Aqua Hotel Amenities and Services

Every aspect of The Radisson Blu Aqua Hotel, Chicago sets a towering new standard for other hotels to follow; the wide range of World of Radisson services and features are unique and unparalleled.

Guests will be completely satisfied with the exceptional "Yes I Can!SM" Service, special 100% Guest Satisfaction Guarantee and such features as high-speed Internet, 3-hour express laundry, late check-out and an amazing range of indoor and outdoor facilities. Services include an 8,000-square-foot, state-of-the-art fitness and spa facility, with the city's leading sporting and fitness amenities, including outdoor and indoor pools, a beautifully landscaped lifestyle garden and a wealth of additional contemporary well-being indulgences.

Concierge Services

The Radisson Blu Aqua Hotel's first-class Concierge Desk is available to assist guests with booking tours, obtaining tickets to shows and events, limo and dinner reservations, spa services and acquiring information about current events in the city of Chicago. Experience an exceptional commitment to service that aims to make every stay ideal.

Mobile App

Android, iPhone and iPad and users can now experience the Radisson Blu Aqua Hotel before they arrive. Users can learn about hotel services, amenities, and area attractions, while guests staying at the hotel can order room service, schedule a wakeup call, request housekeeping services, and much more.

Free high-speed Internet

As part of the E@syConnect Service concept, Radisson Blu hotels offer Free Internet access. High-speed and/or wireless Internet access is now free of charge for all guests throughout the hotel.

The Radisson Blu Aqua Hotel also offers One Touch Service, 3-hour Express Laundry, Express Check-Out, Late Check-Out, and Grab & Run Breakfast.

For more information, go to

Hotel Dining

Experience Filini at the Radisson Blu Aqua Hotel, a contemporary, Italian restaurant and bar. Honoring traditions of classic Italian cuisine and culture with an upscale, urban energy, Filini boasts unpretentious, yet exquisitely prepared Italian fare, featuring Italian imports as well as local ingredients and an expansive wine list featuring more than 100 Italian wines.

Breakfast on the Go! For guests on the go with no time for a sit-down breakfast, the Radisson offers the Grab & Run takeaway breakfast. Tea and coffee in disposable cups along with fresh fruits and energy bars are available on a special table in the lobby so that none of our guests miss out on the most important meal of the day.

Local Attractions

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

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