U.S. Department of Health and Human Services

Whole Genome Approaches to Complex Kidney Disease

2/11/2012 7:00 AM
2/12/2012 7:00 AM
Yes
No
NIDDK Workshop Contact:
Jeffrey Kopp, M.D.
National Institute of Diabetes and Digestive and Kidney Diseases
jeffreyk@intra.niddk.nih.gov

Workshop Logistics Coordinator:
John Hare, M.S., CMP
The Scientific Consulting Group, Inc. (SCG)
jhare@scgcorp.com
North Bethesda
 

Event Details

Cross-cutting Questions

  1. What are the technologies that will be most useful for human genetics over the next 3-5 years?
  2. What populations, clinical samples, and phenotypic information do we need to most effectively identify susceptibility genes for complex glomerular diseases?
  3. How can we best use existing repositories and databases to extract information about kidney disease?
  4. How can we analyze, interpret and share the massive datasets that will be generated by whole genome/exome approaches?
  5. What are the relevant ethical, legal, and social issues now and what is on the horizon?
  6. How can we enhance public access to genetic information and help individuals understand the concept of genetic susceptibility in general and their own genetic profiles in particular?
  7. Which professionals will counsel individuals about their genetic risk for kidney disease, and what resources and training do they need?
  8. How might genetic susceptibility information be integrated into nephrology and primary care practice to improve patient outcomes and reduce the burden of chronic kidney disease?

Steering Committee

Barry Freedman, Wake Forest Baptist Medical Center
Linda Kao, Johns Hopkins Bloomberg School of Public Health
Matthias Kretzler, University of Michigan
Martin Pollak, Harvard University
John Sedor, Case Western Reserve University
Andrey Shaw, Washington University in St. Louis - Co-Chair

NIH

Jeffrey Kopp, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) - Co-Chair
Michael Flessner, NIDDK
Paul Kimmel, NIDDK
Rebekah Rasooly, NIDDK
Sara Hull, National Human Genome Research Institute - Co-Chair
Cheryl Winkler, National Cancer Institute

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Agenda

Saturday, February 11, 2012

7:30 - 8:00 a.m. Registration and Continental Breakfast
8:00 - 8:05 a.m. Introduction
Robert Star, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Jeffrey Kopp, NIDDK
8:05 - 8:45 a.m. Population Genetics to Personalized Medicine: An Icelandic Saga
Kari Stefansson, deCode, Iceland
8:45 - 9:00 a.m. Discussion

Session I: Resources

9:00 - 9:30 a.m. U.S. Studies and Repositories: Opportunity and Challenge
Linda Kao, The Johns Hopkins University
9:30 - 9:45 a.m. Discussion
9:45 - 10:15 a.m. European Studies and Repositories: Opportunity and Challenge
Gerjan Navis, University Medical Center Groningen, The Netherlands
10:15 - 10:30 a.m. Discussion
10:30 - 11:00 a.m. Break
11:00 - 11:30 a.m. NCBI Databases of Genetic Variants—What Is Available and How Is It Best Used?
Wendy Rubinstein, NIH/NLM/NCBI
11:30 - 11:45 a.m. Discussion

Session II: Study Designs

11:45 a.m. - 12:30 p.m. Overview of Whole Genome Study Designs to Find Genes Contributing to Complex Diseases
Steve Rich, University of Virginia
12:30 - 12:45 p.m. Discussion
12:45 - 1:30 p.m. Lunch

Session III: Sequence and Analysis

1:30 - 1:45 p.m. Introduction to Exome Studies: Approaches, Analysis, and Problems
Andrey Shaw, Washington University in St. Louis
1:45 - 2:15 p.m. Rare Variant Analysis: Aggregation Methods
Suzanne Leal, Baylor College of Medicine
2:15 - 2:30 p.m. Discussion
2:30 - 3:00 p.m. Lessons From Genetic Analysis Workshop 17: Aggregation, Machine Learning, and Data Mining Approaches
Joan Bailey-Wilson, NHGRI
3:00 - 3:15 p.m. Discussion
3:15 - 3:45 p.m. Rare Variant Analysis: Design and Analysis Strategies
Xihong Lin, Harvard University
3:45 - 4:00 p.m. Discussion
4:00 - 4:30 p.m. Filtering and Integration of Exome Data Sets
Jamie Teer, National Institutes of Health Intramural Sequencing Center
4:30 - 4:45 p.m. Discussion
4:45 - 5:00 p.m. Break
5:00 - 5:30 p.m. Data Annotation to Identify Actionable Variants
Ben Solomon, NHGRI
5:30 - 5:45 p.m. Discussion
5:45 - 6:15 p.m. Group Discussion-Issues in Data Analysis: What are the Challenges?
Andrey Shaw, Washington University in St. Louis
Cheryl Winkler, National Cancer Institute

Session IV: Ethical, Legal, and Social Issues

6:15 - 6:45 p.m. Data Sharing: Access and Confidentiality
Laura Rodriguez, NHGRI
6:45 - 7:00 p.m. Discussion
7:00 p.m.

Adjourn for the day

Sunday, February 12, 2012

7:30 - 8:00 a.m. Continental Breakfast
8:00 - 8:30 a.m. Consent Issues: What Do Subjects Need to Know and How Do We Tell Them?
Julie Sapp, NHGRI
8:30 - 8:45 a.m. Discussion
8:45 - 9:15 a.m. Communicating Research Information to Subjects: Research Results and Incidental, Actionable Findings
Ben Berkman, NHGRI
9:15 - 9:30 a.m. Discussion
9:30 - 10:00 a.m. Ethnicity and Community: Impact of Genetic Findings and Disclosing Results
Malia Fullerton, University of Washington
10:00 - 10:15 a.m. Discussion
10:15 - 10:30 a.m. Break
10:30 a.m. - 12:00 p.m. Breakout Groups
  1. Cohorts: What data/samples should we collect from what populations?
    Linda Kao, The Johns Hopkins University
    Martin Pollak, Harvard University


  2. ELSI: What is the optimal way to conduct whole genome research?
    Sara Hull, NHGRI

  3. Incorporating genetic data into nephrology practice: What might the future look like and what is the research agenda?
    John Sedor, Case Western Reserve University
12:00 - 1:00 p.m. Plenary Discussion and Working Lunch
Reports From Cohorts, ELSI, and Nephrology Practice Groups
1:00 p.m. Adjournment
(NEPTUNE meeting begins)

Directions/Travel

LOCATION

Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
North Bethesda, MD 20852
Telephone: (301) 822-9200 or (800) 859-8003
Fax: (301) 822-9201
(More hotel information can be obtained from this Website.)
 

AIR TRAVEL

Travel arrangements are your own responsibility, but you should know that three airports serve the Washington, DC, metropolitan area. Please make your own reservations obtaining the lowest possible coach fare.
 
Should you decide to extend your stay at your own expense, DC area attractions are only a short distance away from the suggested hotel.
 
Hotel and travel information is listed below.

ACCOMMODATIONS

A block of sleeping rooms for meeting participants has been reserved for the NIDDK Whole Genome Approaches to Complex Kidney Diseases Workshop at the Bethesda North Marriott Hotel & Conference Center. The rate is the prevailing government rate of $183 per night for single occupancy, plus tax (currently 13%). Reservations will be for arrival on Friday, February 10, 2012, with a departure of Sunday,
February 12, 2012. If you require alternate dates, please send an email to John Hare of The Scientific Consulting Group, Inc. at jhare@scgcorp.com . Participants may make reservations by calling the hotel directly (numbers below) or online at https://resweb.passkey.com/Resweb.do?mode=welcome_ei_new&eventID=8285689&utm_source=2644099&utm_medium=email&utm_campaign=10818261 . Make sure you identify yourself as a member of the NIDDK Genome group to receive the group rate. THE ROOM BLOCK WILL BE IN EFFECT AT THE GOVERNMENT RATE UNTIL FRIDAY, FEBRUARY 3, 2012, ONLY OR UNTIL FULL, WHICH EVER COMES FIRST. ANY ROOM RESERVATIONS RECEIVED AFTER THAT DATE WILL BE ACCEPTED ON A SPACE AND RATE AVAILABILITY BASIS. Check-in time is 4:00 p.m., and check-out time is 12:00 p.m. Any reservation cancellations must be made prior to 4:00 p.m. the day before to the scheduled arrival date, or charges will apply. If you plan to cancel your attendance, please alert the hotel as well as John Hare at jhare@scgcorp.com . The hotel information is as follows:

DRIVING DIRECTIONS

From points North and East
Take I-95 South toward Washington to I-495 West (Exit 27-Capital Beltway) toward Silver Spring. Follow I-495 West for 9 miles to Exit 34 (Bethesda/Wisconsin Avenue) toward Rockville. Continue on Route 355 North (Rockville Pike) for 3 miles. Turn left at the light onto Marinelli Road. The hotel is on the right.
 
From points North and West
Take I-270 South. After Exit 8 (Shady Grove Road), merge right into the local lanes. Take Exit 4A (Montrose Road East) onto Montrose Road. Turn right onto Rockville Pike/MD-355 South. Turn right at the light onto Marinelli Road. The hotel is on the right.
 
From Points South
Take I-95 North to I-495 (Capital Beltway West) toward Tysons Corner/Rockville. Follow I-495 for 20 miles. Take Exit 36 (MD-187) toward Bethesda/Rockville. Bear left to take the ramp toward Rockville. Turn left onto Old Georgetown Road. Turn right onto Executive Boulevard. Turn left at the light onto Marinelli Road. The hotel is on the left.
 
From Baltimore/Washington International Thurgood Marshall Airport (BWI)
Take I-195 to Exit 4B (Route I-95 South). Take I-95 South toward Washington (20 miles) to I-495 West (Exit 27-Capital Beltway) toward Silver Spring. Follow I-495 West for 9 miles to Exit 34 (Bethesda/Wisconsin Avenue) toward Rockville. Continue on Route 355 North (Rockville Pike) for 3 miles. Turn left at the light onto Marinelli Road. The hotel is on the right.
 
From Washington Dulles International Airport (IAD)
Take the Dulles Access Road to Exit 18 (I-495) to Maryland. Take Exit 36 (MD-187) toward Bethesda/Rockville. Bear left to take the ramp toward Rockville. Turn left onto Old Georgetown Road. Turn right onto Executive Boulevard. Turn left at the light onto Marinelli Road. The hotel is on the left.
 
From Ronald Reagan Washington National Airport (DCA)
Take the George Washington Parkway North for 12 miles to the Capital Beltway (I-495) toward Maryland. Take Exit 36 (MD-187) toward Bethesda/Rockville. Bear left to take the ramp toward Rockville. Turn left onto Old Georgetown Road. Turn right onto Executive Boulevard. Turn left at the light onto Marinelli Road. The hotel is on the left.

METRO INFORMATION

The Metro system is a clean and reliable mode of transportation. It operates from 5:00 a.m. to 12:00 midnight on Monday through Thursday; 5:00 a.m. to 3:00 a.m. on Fridays; 7:00 a.m. to 3:00 a.m. on Saturdays; and 7:00 a.m. to 12:00 midnight on Sundays. Each passenger must buy a farecard to travel in the system. Guides for purchasing farecards are posted on the vending machines in each station. Each Metro car features a complete color-coded map of the system. Station attendants on duty at each station can provide additional information on request. A map of the system is available at: http://www.wmata.com/rail/maps/map.cfm .
 
From Union Station or downtown Washington (main Metro Lines into the city converge at Metro Center Station and Gallery Place Station), take the Metro Red Line toward Shady Grove. Exit at the White Flint Station and cross the street to the hotel.

SHUTTLES

SuperShuttle offers service to most hotels from Ronald Reagan Washington National Airport, Washington Dulles International Airport, and Baltimore/Washington International Thurgood Marshall Airport. The shuttle leaves on an as-needed basis between the hours of 5:30 a.m. and 11:00 p.m. During other times, arrangements for a shuttle can be made by calling 1-800-258-3826 from the airport, or visit their Web site at http://supershuttle.com .

TAXIS

The taxi fare is approximately $55 from Ronald Reagan Washington National Airport, approximately $55 from Washington Dulles International Airport, and approximately $75 from Baltimore/Washington International Thurgood Marshall Airport.

PARKING INFORMATION

There is complimentary parking for meeting participants at the conference center. Passes will be available at the meeting registration desk.

Minutes

​Minutes are currently unavailable.

Attendees

​​Attendees are currently unavailable.

Abstracts

Abstracts are currently unavailable.

Location

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  • Bethesda North Marriott Hotel & Conference Center
  • 5701 Marinelli Road
  • MD
Webinar

Contacts

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NIDDK Workshop Contact:
Jeffrey Kopp, M.D.
National Institute of Diabetes and Digestive and Kidney Diseases
jeffreyk@intra.niddk.nih.gov

Workshop Logistics Coordinator:
John Hare, M.S., CMP
The Scientific Consulting Group, Inc. (SCG)
jhare@scgcorp.com