CFF - Observational Study in People with CF with the G551D mutation

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Clinical Research Information Sheet

Study Name:

Observational Study in People with CF with the G551D mutation

Study Type:

Observational

Intervention Category:

Not Applicable

Study Sponsor:

Rowe, Steven

Funding for this trial has been provided in full or in part by Cystic Fibrosis Foundation Therapeutics, Inc.

Study Phase:

Other

Recruitment Status:

Trial Completed

Study Drug(s):

Not Applicable

Number of Participants Being Recruited:

120

Single / Multi-Center:

Multi-Center

STUDY BACKGROUND INFORMATION:

The goal of this research study is to collect blood, urine, and sputum samples to be stored for future research. This is called specimen banking. Information about the amount of salt in sweat, and information about health such as lung function, weight and questionnaires will also be collected. Researchers for future cystic fibrosis research may use the banked specimens and the health information to develop tests that could be used to help identify additional drugs that can help people with CF. At specific study sites people can participate in sub-studies that will involve additional procedures such as sweat rate testing, ability to clear mucus from the lungs, induced sputum collection, or taking a gastrointestinal pH pill.

ELIGIBILITY

Age:	>= 6 Years
FEV1:	Not Applicable
P. aeruginosa status:	Not applicable
B. cepacia status:	Not applicable
Other Primary Eligibility Requirements: Must have the G551D-CFTR mutation on at least 1 allele (any known or unknown mutations allowed in second allele).
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:

Rogers, Nicole
(206) 884-7554
nicole.rogers@seattlechildrens.org

Trial Specific Link on ClinicalTrials.gov:

http://clinicaltrials.gov/ct2/show/NCT01521338?term=goal+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

University of California San Diego -Thornton (Adult), La Jolla, CA, 92037
Contact Information:
    Kwan, Doris
    Phone: (858) 657-7119
    Email: dlkwan@ucsd.edu
Stanford University Medical Center (Pediatric), Palo Alto, CA, 94304
Contact Information:
    Dunn, Colleen
    Phone: (650) 736-0388
    Email: cedunn@stanford.edu

Children's Hospital Colorado (Pediatric), Aurora, CO, 80045
Contact Information:
    Pardee, Churee
    Phone: (720) 777-6162
    Email: chureeporn.pardee@childrenscolorado.org
National Jewish Health (Adult), Denver, CO, 80206
Contact Information:
    Jones, Marion
    Phone: (303) 398-1265
    Email: jonesm@njhealth.org

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

University of Chicago (Adult), Chicago, IL, 60637
Contact Information:
    Holland, Spring
    Phone: (773) 834-4053
    Email: sholland@medicine.bsd.uchicago.edu

Riley Hospital for Children Indiana University Medical Center (Pediatric), Indianapolis, IN, 46202
Contact Information:
    Richardson, Stacey
    Phone: (317) 948-7121
    Email: stlyrich@iupui.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

Johns Hopkins University (Pediatric), Baltimore, MD, 21287
Contact Information:
    Callahan, Karen
    Phone: (443) 287-8983
    Email: kcallah1@jhmi.edu

Children's Hospital of Michigan (Pediatric), Detroit, MI, 48201
Contact Information:
    Van Wagnen, Catherine
    Phone: (313) 745-4737
    Email: cvanwag@med.wayne.edu
Helen DeVos Women and Children's Center (Pediatric), Grand Rapids, MI, 49503
Contact Information:
    Symington, Thomas
    Phone: (616) 391-9366
    Email: thomas.symington@spectrumhealth.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

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

Children's Hospital of Buffalo (Pediatric), Buffalo, NY, 14222
Contact Information:
    Caci, Nadine
    Phone: (716) 878-7524
    Email: ncaci@upa.chob.edu

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

Oregon Health Sciences University (Pediatric), Portland, OR, 97201
Contact Information:
    Andrews-Chavez, Brian
    Phone: (503) 494-6974
    Email: andrewbr@ohsu.edu

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
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

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

University of Texas Southwestern Medical Center/ St. Paul University Hospital (Adult), Dallas, TX, 75390
Contact Information:
    Keller, Ashley
    Phone: (214) 648-2817
    Email: Ashley.Keller@UTSouthwestern.edu
University of Texas Southwestern Medical Center/ St. Paul University Hospital (Adult), Dallas, TX, 75390
Contact Information:
    Dunn-Richmond, Kate
    Phone: (214) 648-2817
    Email: Kate.dunn-richmond@utsouthwestern.edu
Baylor College of Medicine (Pediatric), Houston, TX, 77030
Contact Information:
    Schaap, Nicoline
    Phone: (832) 822-4252
    Email: nxschaap@texaschildrens.org

Intermountain Cystic Fibrosis Center (Adult), Salt Lake City, UT, 84132
Contact Information:
    Packer, Kristyn
    Phone: (801) 585-0401
    Email: kristyn.packer@hsc.utah.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