ATHN Data Summit 2013

ATHN Data Summit 2013

The ATHN Data Summit brings together physicians, nurses, data managers, community, government and industry partners to collaborate, network and exchange ideas, data and expertise.

This year’s 6th 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 7-8, 2013. Register today.

Agenda Overview

Thanks to you, over 16,500 patients have agreed to opt in to the ATHNdataset and share their demographic, clinical and genomic information for research. We will report detailed findings from this community resource and explore how the data can be used as the foundation for the first ATHN Affiliate cohort study.

Join us to hear initial results and insights gained through Community Counts! The CDC Public Health Surveillance for Bleeding Disorders project. Learn about ATHN's work as the National Hemophilia Program Coordinating Center and the progress of our partnership with the regions on the first ever national hemophilia program needs assessment and evaluation. Hear about the national roll-out of My Life Our Future: Genotyping for Progress in Hemophilia and how you can get involved.

Don't miss this extraordinary opportunity to participate, interact during extended networking opportunities – including ATHN Industry Consortium partner exhibit hours – and learn more about how ATHN projects and resources can provide a voice to you and your patients toward setting the national priorities to improve the future care for people with bleeding disorders.

Attend breakfast breakouts for focused, peer-to-peer interaction on a range of topics including: ATHN 1: Cardiovascular Study (for Study Investigator Team only), Thrombosis, Rare Bleeding Disorders, My Life Our Future: Join the Effort, Data Management – Hot Topics, and the National Hemophilia Program Coordinating Center Working Group. Register today.

When

November 7-8, 2013
A welcome lunch reception and registration begin at 11:00 a.m. on Thursday, November 7th followed by the opening session at 1:00 p.m. The robust agenda concludes at 12:45 pm on Friday, November 8th. Several ATHN committees will meet the morning of November 7.

Where

Swissôtel Chicago
323 E. Wacker Drive

Chicago, IL 60601
www.swissotel.com
1-312-565-0565
1-312-268-8202 (fax)

Reservations: https://resweb.passkey.com/go/datasummit2013 or call 888-73 SWISS (79477). (booking code ATHN0913).


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Pre-conference meetings

November 6, 2013
1:00 pm - 5:00 pm National Hemophilia Program Coordinating Center (NHPCC) Advisory Group (invitation only)
November 7, 2013
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
11:00 am – 1:00 pm Registration and Lunch Welcome Reception
11:00 am – 12:15 pm

ATHN Committees (invitation only)
Rare Bleeding Disorders Committee
Privacy, Security and Data Access Committee
Community Relations & Communications Committee
Beta Testers Working Group
NHPCC Working Group
Research Committee

Agenda

November 7th
1:00 pm - 1:10 pm Opening Session ATHN Data Summit 2013

Welcome and Introductions

1:10 pm - 1:30 pm

The State of ATHN
Projects
Partners
Vision of the Future

1:30 pm - 3:00 pm

Growing Community Resources with the ATHNdataset
Project Status
Uses for research
Applications for performance management
Value for advocacy
Infrastructure Improvements

3:00 pm - 3:15 pm Break
3:15 pm - 4:00 pm

Community Counts: CDC Public Health Surveillance for Bleeding Disorders
HTC Patient Population Profile Success to Date
Registry for Bleeding Disorders Surveillance Programs & Plans

4:00 pm - 4:15 pm Break
4:15 pm - 5:30 pm

Tracks

Track One: Researchers

  • ATHN Cohort Study
  • ATHN Safety Surveillance

Track Two: Data Managers

  • Study Manager Training

Track Three: Clinicians

  • Registry for Bleeding Disorders: Collecting Data Accurately
6:30 pm - 8:30 pm ATHN Networking Reception
November 8th
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 Meeting (for Study Investigator Team only)
BB2: Thrombosis
BB3: Rare Bleeding Disorders
BB4: My Life Our Future – Join the Effort
BB5: Data Management – Hot Topics
BB6: National Hemophilia Program Coordinating Center (NHPCC) Working Group

8:45 am – 9:00 am Break
9:00 am - 9:20 am Outcomes Measures: An International Perspective
9:20 am – 10:45 am

Making the Best Care Even Better
National Hemophilia Program Coordinating Center (NHPCC)
Regional Needs Assessment
HTC Needs Assessment
Patient Needs Assessment
HP2020 Healthy People

10:45 am - 11:00 am Break
11:00 am - 11:45 am Establishing National Priorities for Technical Assistance and Quality Improvement: Your Voice Counts
11:45 am - 12:00 pm ATHNadvoy
12:00 pm – 12:30 pm

My Life Our Future: Genotyping for Progress in Hemophilia
Pilot Project: Lessons learned
National Launch

12:30 pm – 12:45 pm Where We Go From Here

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, 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.

ATHN gratefully acknowledges its Industry Consortium for its support.

Industry Visionaries

Industry Supporters

CSL Behring
Biogen IDEC Hemophilia

We welcome your involvement and hope you will join us for the 6th Annual ATHN Data Summit. Register Now.

Swissôtel Chicago Hotel Accommodations

Make your reservations before October 14th and SAVE

Swissôtel Chicago
323 E. Wacker Drive
Chicago, IL 60601

Reservations: https://resweb.passkey.com/go/datasummit2013 or call 888-73 SWISS (79477). (booking code ATHN0913).

Ask for the special ATHN rate or mention booking code "ATHN0913" for $239/night (single or double). Reservations received after October 14th will be offered at lowest available rate and will be subject to availability.

Make your reservation early and save!

Welcome to the Swissôtel Experience

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

Swissôtel Chicago offers 661 tastefully decorated and generously over-sized luxurious non-smoking rooms and suites, with a full range of exclusive amenities.

A sumptuous breakfast buffet in Geneva offers a wide range of choices to energize your day. Savor a delectable lunch or dinner at The Palm, an acclaimed city tradition, or enjoy small plates and cocktails in Amuse, our lobby lounge. Take your workout to a new level in the Penthouse Fitness Centre and Pool, which boasts panoramic 42nd-floor views.

From the newly renovated lobby to the plush interior of our Presidential Suite, Swissôtel Chicago is graced with European style and contemporary Swiss elegance truly unique among downtown Chicago accommodations

  • Located just steps from The Magnificent Mile in downtown Chicago, Illinois
  • 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
  • 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
http://www.swissotel.com/hotels/chicago

Directions and Transportation

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

To/From O'Hare:
  • Shared Ride Shuttle: The "Go Airport Express Shuttle" trip, due to other hotel stops, the trip may take up to 1.5 hours. The cost is approximately $30 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 airport 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 a minimum of at least 4 hours in advance. www.airportexpress.com/reservations
  • A taxi cab will take about 45 minutes and will cost about $40-50.
  • Public Transportation: the CTA Blue Line will take 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, due to other hotel stops, may take up to 1.5 hours. The cost is approximately $25 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 a minimum of at least 4 hours in advance.
  • A taxi cab will take about 30 minutes and will cost about $30-40.
  • Public Transportation: the CTA Orange Line Train will take 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.

Please refer to company's website for additional information: www.airportexpress.com/reservations.

Sedan Service

Can be arranged by calling the hotel Concierge at (312) 268-8280 or via email at Concierge.Chicago@swissotel.com

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.

www.themagnificentmile.com

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