CFF - Genetic Modifiers of Cystic Fibrosis: Sibling Study

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Clinical Research Information Sheet

Study Name:

Genetic Modifiers of Cystic Fibrosis: Sibling Study

Study Type:

Observational

Intervention Category:

Not Applicable

Study Sponsor:

Cutting, Garry

Study Phase:

Other

Recruitment Status:

Recruiting

Study Drug(s):

Not Applicable

Number of Participants Being Recruited:

Single / Multi-Center:

Multi-Center

STUDY BACKGROUND INFORMATION:

The purpose of the study is to find genetic and environmental factors affecting the variability in CF. This study will require collecting blood samples from CF siblings and twins and their parents; reviewing medical records of CF siblings (including information in the CF Registry) and the completion of questionnaires about personal medical and family medical history. Patients will be enrolled through their CF Clinics. To obtain blood, consent, and to administer the Personal and Family Questionnaires will take approximately 20 to 40 minutes per sibling.

ELIGIBILITY

Age:	>= 1 Days
FEV1:	Not Applicable
P. aeruginosa status:	Not applicable
B. cepacia status:	Not applicable
Other Primary Eligibility Requirements:
Note: Detailed eligibility criteria information may be available on clinicaltrials.gov. If a specific trial listing for this trial is available, a link to the specific clinicaltrials.gov listing will be present in the "More Information" section below.

FOR MORE INFORMATION:

Sponsor Contact Information:

Bonner, Jenna
(443) 287-5132
jbonner8@jhmi.edu

Trial Specific Link on ClinicalTrials.gov:

http://www.clinicaltrials.gov/ct2/show/NCT00037778?term=genetic+modifiers+and+cystic+fibrosis&rank=1

Clinical Research Terms Glossary:

Click here

PARTICIPATING SITES:

The sites listed below are currently recruiting subjects. Please note that this list generally lists either the pediatric or adult program but not both even though both programs may be recruiting subjects. Also, this list does not include sites that may be participating in the study but are not yet open for recruitment. If you are interested in this study please contact your center for more information.

The Children's Hospital/University of Alabama at Birmingham (Pediatric), Birmingham, AL, 35233
Contact Information:
    Hathorne, Heather
    Phone: (205) 638-9568
    Email: hhathorne@peds.uab.edu

Phoenix Children's Hospital (Pediatric), Phoenix, AZ, 85016
Contact Information:
    Argel, Natalia
    Phone: (602) 546-0343
    Email: nargel@phoenixchildrens.com

Kaiser Permanente Medical Care Program (Pediatric), Oakland, CA, 94611
Contact Information:
    Lee, Julie
    Phone: (510) 752-7558
    Email: julie.lee@kp.org
Stanford University Medical Center (Pediatric), Palo Alto, CA, 94304
Contact Information:
    Dunn, Colleen
    Phone: (650) 736-0388
    Email: cedunn@stanford.edu

Central Connecticut Cystic Fibrosis Center (Pediatric), Hartford, CT, 06102
Contact Information:
    Drapeau, Ginny
    Phone: (860) 545-9434
    Email: gdrapea@ccmckids.org
Yale University School of Medicine (Pediatric), New Haven, CT, 06520
Contact Information:
    Young, Jane
    Phone: (203) 785-5852
    Email: jane.young@yale.edu

Alfred I. duPont Hospital for Children (Pediatric and Adult), Wilmington, DE, 19899
Contact Information:
    Budd, Sandra
    Phone: (302) 651-6536
    Email: sbudd@nemours.org

All Children's Hospital (Pediatric), St. Petersburg, FL, 33701
Contact Information:
    Hosler, Kathy
    Phone: (727) 767-7247
    Email: Kathy.Hosler@allkids.org

Emory University (Pediatric), Atlanta, GA, 30322
Contact Information:
    Hunter, Eric
    Phone: (404) 727-9960
    Email: eahunte@emory.edu

University of Iowa (Pediatric), Iowa City, IA, 52242
Contact Information:
    Teresi, Mary
    Phone: (319) 384-7546
    Email: mary-teresi@uiowa.edu

Ann and Robert H. Lurie Children's Hospital of Chicago (Pediatric), Chicago, IL, 60611
Contact Information:
    Singh, Noopur
    Phone: (312) 227-6861
    Email: nosingh@luriechildrens.org
University of Chicago (Adult), Chicago, IL, 60637
Contact Information:
    Holland, Spring
    Phone: (773) 834-4053
    Email: sholland@medicine.bsd.uchicago.edu

Children's Hospital Boston (Pediatric), Boston, MA, 02115
Contact Information:
McGeachey, Amanda
Email: amanda.mcgeachey@childrens.harvard.edu
Massachusetts General Hospital (Pediatric), Boston, MA, 02114
Contact Information:
    Doolittle, Caitlin
    Phone: (617) 726-3719
    Email: cdoolittle1@partners.org

University of Michigan Health System (Pediatric), Ann Arbor, MI, 48109
Contact Information:
    Kruse, Dawn
    Phone: (734) 615-3266
    Email: dmkruse@umich.edu
Children's Hospital of Michigan (Pediatric), Detroit, MI, 48201
Contact Information:
    Van Wagnen, Catherine
    Phone: (313) 745-4737
    Email: cvanwag@med.wayne.edu

Children's Hospitals and Clinics (Pediatric), Minneapolis, MN, 55404
Contact Information:
    Johnson, Mahrya
    Phone: (612) 813-6384
    Email: mahrya.johnson@childrensmn.org
The Minnesota Cystic Fibrosis Center (Pediatric), Minneapolis, MN, 55455
Contact Information:
    Grover, Patricia
    Phone: (612) 626-7425
    Email: Grove026@umn.edu

The Children's Mercy Hospital (Pediatric and Adult), Kansas City, MO, 64108
Contact Information:
    Schmoll, Candy
    Phone: (816) 701-1339
    Email: cschmoll@cmh.edu
St. Louis Children's Hospital Washington University (Pediatric), St. Louis, MO, 63110
Contact Information:
    Rodgers, Denise
    Phone: (314) 286-1176
    Email: rodgers@kids.wustl.edu
St. Louis Children's Hospital Washington University (Pediatric), St. Louis, MO, 63110
Contact Information:
    Burks, Patricia
    Phone: (314) 454-5175
    Email: Burks_P@kids.wustl.edu

University of Mississippi Medical Center (Pediatric), Jackson, MS, 39216
Contact Information:
    Adcock, Kim
    Phone: (601) 815-9172
    Email: kadcock@umc.edu

University of North Carolina at Chapel Hill (Pediatric), Chapel Hill, NC, 27599
Contact Information:
    Stephenson, Kelly
    Phone: (919) 843-7121
    Email: kelly.stephenson@unc.edu
Duke University Medical Center (Pediatric), Durham, NC, 27710
Contact Information:
    Auten, Kathy
    Phone: (919) 684-2281
    Email: kathy.auten@duke.edu

University of Nebraska Medical Center (Pediatric), Omaha, NE, 68198
Contact Information:
    Acquazzino, Diane
    Phone: (402) 559-6275
    Email: dracquaz@unmc.edu
University of Nebraska Medical Center (Pediatric), Omaha, NE, 68198
Contact Information:
    Telfer, Raquel
    Phone: (402) 559-6275
    Email: raquel.telfer@unmc.edu

Dartmouth Hitchcock Medical Center (Adult), Lebanon, NH, 03756
Contact Information:
    Moulton, Lisa
    Phone: (603) 650-8178
    Email: Lisa.A.Moulton@Hitchcock.ORG

Monmouth Medical Center (Pediatric), Long Branch, NJ, 07740
Contact Information:
    Marra, Bridget
    Phone: (732) 222-4474
    Email: bmarra@sbhcs.com
Goryeb Children's Hospital of Atlantic Health (Adult), Morristown, NJ, 07962
Contact Information:
    Cahill, Carol
    Phone: (973) 971-5138
    Email: carol.cahill@atlantichealth.org

University of New Mexico School of Medicine (Pediatric), Albuquerque, NM, 87131
Contact Information:
    Redway, Abby
    Phone: (505) 272-5886
    Email: ajredway@salud.unm.edu

Children's Hospital of Buffalo (Pediatric), Buffalo, NY, 14222
Contact Information:
    Caci, Nadine
    Phone: (716) 878-7524
    Email: ncaci@upa.chob.edu
The Steven & Alexandra Cohen Children's Medical Center of New York (Pediatric), Great Neck, NY, 11021
Contact Information:
    Galvin, Susan
    Phone: (516) 622-5281
    Email: sgalvin@nshs.edu
Beth Israel Medical Center (Pediatric), New York, NY, 10003
Contact Information:
    Grece, Carroll Anne
    Phone: (212) 420-4196
    Email: cgrece@chpnet.org
University of Rochester Medical Center Strong Memorial (Pediatric), Rochester, NY, 14642
Contact Information:
    Jenks, Nancy
    Phone: (585) 275-8580
    Email: nancy_jenks@urmc.rochester.edu
New York Medical College/Westchester Medical Center (Pediatric), Valhalla, NY, 10595
Contact Information:
    Gherson, Ingrid
    Phone: (914) 594-3320
    Email: ingrid_gherson@nymc.edu

Children's Hospital Medical Center of Akron (Pediatric), Akron, OH, 44308
Contact Information:
    Ouellette, Deborah
    Phone: (330) 543-3089
    Email: douellette@chmca.org
Cincinnati Children's Hospital Medical Center (Pediatric), Cincinnati, OH, 45229
Contact Information:
    Duan, Lorrie
    Phone: (513) 636-7089
    Email: lorrie.duan@cchmc.org
University Hospitals Case Medical Center/Rainbow Babies and Children's Hospital (Pediatric), Cleveland, OH, 44106
Contact Information:
    Ksenich, Roberta (Bobbi)
    Phone: (216) 844-5733
    Email: Roberta.Ksenich@UHHospitals.org
Nationwide Children's Hospital (Pediatric), Columbus, OH, 43205
Contact Information:
    Johnson, Mary Terri
    Phone: (614) 722-4766
    Email: Terri.Johnson@nationwidechildrens.org
Toldeo Children's Hospital (Pediatric), Toledo, OH, 43606
Contact Information:
    Houser, Kelly
    Phone: (419) 291-4630
    Email: kelly.houser@promedica.org

Children's Hospital of Philadelphia University of Pennsylvania (Pediatric), Philadelphia, PA, 19104
Contact Information:
    Kubrak, Christina
    Phone: (267) 426-5135
    Email: kubrak@email.chop.edu
St. Christopher's Hospital for Children (Pediatric), Philadelphia, PA, 19134
Contact Information:
    Aramburo, Marcella
    Phone: (215) 427-3816
    Email: Marcella.aramburo@drexelmed.edu
Children's Hospital of Pittsburgh of UPMC (Pediatric), Pittsburgh, PA, 15213
Contact Information:
    Hartigan, Elizabeth
    Phone: (412) 692-7060
    Email: elizabeth.hartigan@chp.edu

Medical University of South Carolina (Pediatric), Charleston, SC, 29403
Contact Information:
    Warden, Ashley
    Phone: (843) 792-4349
    Email: jonesash@musc.edu

University of Tennessee CF Care and Research Center (Pediatric), Memphis, TN, 38103
Contact Information:
    Culbreath, Barbara
    Phone: (901) 287-5351
    Email: bculbreath@uthsc.edu
Vanderbilt Children's Hospital Vanderbilt University Medical Center (Pediatric), Nashville, TN, 37232
Contact Information:
    Berry, Pamela
    Phone: (615) 936-8308
    Email: pamela.berry@Vanderbilt.Edu

Children's Medical Center of Dallas (Pediatric), Dallas, TX, 75235
Contact Information:
    Dunn-Richmond, Kate
    Phone: (214) 648-2817
    Email: Kate.dunn-richmond@utsouthwestern.edu
Children's Medical Center of Dallas (Pediatric), Dallas, TX, 75235
Contact Information:
    Hebert, Andrew
    Phone: (214) 456-5618
    Email: andrew.hebert@childrens.com
Cook Children's Medical Center (Pediatric), Fort Worth, TX, 76104
Contact Information:
    Morris, Trudy
    Phone: (682) 885-1244
    Email: Trudy.Morris@cookchildrens.org
Baylor College of Medicine (Pediatric), Houston, TX, 77030
Contact Information:
    Schaap, Nicoline
    Phone: (832) 822-4252
    Email: nxschaap@texaschildrens.org

Intermountain Cystic Fibrosis Center (Pediatric), Salt Lake City, UT, 84132
Contact Information:
    Vroom, Jane
    Phone: (801) 587-7458
    Email: jane.vroom@hsc.utah.edu

University of Virginia (Pediatric), Charlottesville, VA, 22908
Contact Information:
    Moss, Patricia
    Phone: (434) 243-2876
    Email: pcm2v@virginia.edu

Seattle Children's Hospital (Pediatric), Seattle, WA, 98105
Contact Information:
    McNamara, Sharon
    Phone: (206) 987-3921 X1
    Email: sharon.mcnamara@seattlechildrens.org

University of Wisconsin (Pediatric), Madison, WI, 53792
Contact Information:
    Makholm, Linda
    Phone: (608) 262-0340
    Email: Lmakholm@uwhealth.org
Children's Hospital of Wisconsin Froedtert & Medical College of Wisconsin (Pediatric), Milwaukee, WI, 53201
Contact Information:
    Kennedy, Emma
    Phone: (414) 266-4707
    Email: ekennedy@mcw.edu

West Virginia University CF Center (Pediatric and Adult), Morgantown, WV, 26505
Contact Information:
    Collins, Sue
    Phone: (304) 293-7348
    Email: scollins@hsc.wvu.edu