CFF - Fibrosing Colonopathy in Cystic Fibrosis

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Clinical Research Information Sheet

Study Name:

Fibrosing Colonopathy in Cystic Fibrosis

Study Type:

Observational

Intervention Category:

Not Applicable

Study Sponsor:

AbbVie

Study Phase:

Recruitment Status:

Recruiting

Study Drug(s):

Not Applicable

Number of Participants Being Recruited:

Single / Multi-Center:

Multi-Center

STUDY BACKGROUND INFORMATION:

This is a long-term study to assess the occurrence and risk factors for a rare bowel disorder called fibrosing colonopathy (narrowing of the large intestine)in people with cystic fibrosis who take pancreatic enzymes and are participating in the Cystic Fibrosis Patient Registry. Patients will be followed at their regular clinical care visits over a 10-year period and approached if they develop symptoms of fibrosing colonopathy for collection and use of further detailed information. Data routinely collected via the standard cystic fibrosis registry will be used to determine exposure to any specific pancreatic enzyme replacement therapy and to assess potential risk factors for the outcome of confirmed fibrosing colonopathy.

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:

Trial Specific Link on ClinicalTrials.gov:

http://clinicaltrials.gov/ct2/show/NCT01652157

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.

Providence Alaska Medical Center (Pediatric and Adult), Anchorage, AK, 99508
Contact Information:
    Roberts, Vicki
    Phone: (907) 212-3299
    Email: vicki.roberts@providence.org

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

Arkansas Children's Hospital (Pediatric), Little Rock, AR, 72202
Contact Information:
    Hart, Michelle
    Phone: (501) 364-4490
    Email: HartM@archildrens.org
University of Arkansas for Medical Sciences (Adult), Little Rock, AR, 72205
Contact Information:
    Taggart, Adam
    Phone: (501) 416-7019
    Email: agtaggart@uams.edu

Tucson CF Center (Pediatric and Adult), Tucson, AZ, 85724
Contact Information:
    Molina, Osmara
    Phone: (520) 891-6767
    Email: omolina@arc.arizona.edu

Children's Hospital at Oakland (Pediatric), Oakland, CA, 94609
Contact Information:
    Wulff, Alex
    Phone: (510) 428-3885 X5966
    Email: AWulff@mail.cho.org
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
Rady Children's Hospital San Diego and Health Center at the University of California San Diego (Pediatric), San Diego, CA, 92123
Contact Information:
    Holland, Sarah
    Phone: (858) 966-8153
    Email: sholland@rchsd.org
The Regents of the University of California, San Francisco (Pediatric), San Francisco, CA, 94143
Contact Information:
    Moreno, Courtney
    Phone: (415) 476-2984
    Email: morenoc@peds.ucsf.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

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

University of Florida (Pediatric), Gainesville, FL, 32610
Contact Information:
    Baker, Dawn
    Phone: (352) 273-5417
    Email: bakerdj@peds.ufl.edu
University of Florida (Adult), Gainesville, FL, 32610
Contact Information:
    Nichols, Wanda
    Phone: (352) 273-8732
    Email: nichowj@medicine.ufl.edu
Nemours Children's Clinic - Jacksonville (Pediatric), Jacksonville, FL, 32207
Contact Information:
    DeLuca, Elizabeth
    Phone: (904) 697-3804
    Email: bdeluca@nemours.org
Nemours Children's Clinic - Orlando (Pediatric), Orlando, FL, 32806
Contact Information:
    Kesser, Kenneth (Bert)
    Phone: (407) 650-7175
    Email: bkesser@nemours.org
All Children's Hospital (Pediatric), St. Petersburg, FL, 33701
Contact Information:
    Hosler, Kathy
    Phone: (727) 767-7247
    Email: Kathy.Hosler@allkids.org
Tampa General Hospital (Adult), Tampa, FL, 33606
Contact Information:
    Roberson, Suzanne
    Phone: (813) 844-7179
    Email: sroberson@tgh.org

Emory University (Pediatric), Atlanta, GA, 30322
Contact Information:
    Hunter, Eric
    Phone: (404) 727-9960
    Email: eahunte@emory.edu
Georgia Health Sciences University (Pediatric), Augusta, GA, 30912
Contact Information:
    Stapp, Heidi
    Phone: (706) 721-7699
    Email: HSTAPP@gru.edu

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

Saint Luke's Cystic Fibrosis Center of Idaho (Pediatric), Boise, ID, 83712
Contact Information:
    Durham, Dixie
    Phone: (208) 381-7334
    Email: durhamd@slhs.org

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 (Pediatric), Chicago, IL, 60637
Contact Information:
    Cheatham, Jeannine
    Phone: (773) 834-0192
    Email: jcheatham@peds.bsd.uchicago.edu
Lutheran General Children's Hospital (Adult), Niles, IL, 60714
Contact Information:
    Moen, Suellen
    Phone: (847) 738-7334
    Email: suellen.moen@advocatehealth.com
Saint Francis Medical Center (Pediatric), Peoria, IL, 61603
Contact Information:
    Shafer Haddock, Kimberly
    Phone: (309) 655-2189
    Email: Kimberly.S.Haddock@osfhealthcare.org

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

University of Kansas Medical Center (Pediatric), Kansas City, KS, 66160
Contact Information:
    Liebergen, Adrienne
    Phone: (913) 588-6320
    Email: alieberg@kumc.edu
Via Christi - Saint Francis Campus (Pediatric), Wichita, KS, 67218
Contact Information:
    Miller, Sheri
    Phone: (316) 268-6028
    Email: Sheri.Miller@viachristi.org

University of Kentucky (Pediatric), Lexington, KY, 40536
Contact Information:
    Watts, Tammy
    Phone: (859) 257-5087
    Email: twatt2@uky.edu
University of Louisville (Pediatric), Louisville, KY, 40202
Contact Information:
    Tomazin, Janet
    Phone: (502) 852-3772
    Email: jmtoma01@louisville.edu

Tulane University (Pediatric), New Orleans, LA, 70112
Contact Information:
    Gandolfo, Danielle
    Phone: (504) 988-6167
    Email: dgandol@tulane.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
Tufts Medical Center (Pediatric and Adult), Boston, MA, 02111
Contact Information:
    DeDomenico, Corri
    Phone: (617) 636-6401
    Email: Cnelson@tuftsmedicalcenter.org
University of Massachusetts Memorial Health Care (Pediatric), Worcester, MA, 01655
Contact Information:
    Longtine, Karen
    Phone: (508) 856-6970
    Email: Karen.Longtine@umassmed.edu

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

Maine Medical Partners Pediatric Specialty Care (Pediatric), Portland, ME, 04102
Contact Information:
    Milliard, Carrie
    Phone: (207) 662-6712
    Email: millic@mmc.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
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

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 (Adult), 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
Cardinal Glennon Children's Medical Center (St. Louis University) (Pediatric), St. Louis, MO, 63104
Contact Information:
    Kociela, Vikki
    Phone: (314) 577-5608
    Email: kocielav@slu.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

St. Alexius Heart and Lung Clinic (Adult), Bismarck, ND, 58502
Contact Information:
    McPherson, Debra
    Phone: (701) 530-6929
    Email: dmcpherson@primecare.org

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 (Pediatric), Lebanon, NH, 03756
Contact Information:
    Dorman, Dana
    Phone: (603) 629-8311
    Email: Dana.B.Dorman@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

Albany Medical College (Adult), Albany, NY, 12208
Contact Information:
    Mokhiber, Katharine
    Phone: (518) 262-6608
    Email: mokhibk@mail.amc.edu
Children's Hospital of Buffalo (Pediatric), Buffalo, NY, 14222
Contact Information:
    Caci, Nadine
    Phone: (716) 878-7524
    Email: ncaci@upa.chob.edu
Long Island Jewish Medical Center Adult Program (Adult), New Hyde Park, NY, 11040
Contact Information:
    Wann, Li-Chen
    Phone: (516) 712-9608
    Email: LCWann@nshs.edu
Beth Israel Medical Center (Pediatric), New York, NY, 10003
Contact Information:
    Grece, Carroll Anne
    Phone: (212) 420-4196
    Email: cgrece@chpnet.org
Children's Hospital of New York Columbia University (Pediatric), New York City, NY, 10032
Contact Information:
    Kattan, Meyer
    Phone: (212) 305-5122
    Email: mk2833@columbia.edu
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
SUNY Upstate Medical University (Pediatric), Syracuse, NY, 13210
Contact Information:
    Lindner, Donna
    Phone: (315) 464-7525
    Email: lindnerd@upstate.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
The Children's Medical Center of Dayton (Pediatric), Dayton, OH, 45404
Contact Information:
    Bartosik, Sandy
    Phone: (937) 641-4004
    Email: bartosiks@childrensdayton.org
Toldeo Children's Hospital (Pediatric), Toledo, OH, 43606
Contact Information:
    Houser, Kelly
    Phone: (419) 291-4630
    Email: kelly.houser@promedica.org

Oklahoma Cystic Fibrosis Center (Pediatric), Oklahoma City, OK, 73104
Contact Information:
    Fox, Jodie
    Phone: (405) 271-6216
    Email: Jodie-Fox@ouhsc.edu

Hershey Medical Center Pennsylvania State University (Pediatric), Hershey, PA, 17033
Contact Information:
    Kitch, Diane
    Phone: (717) 531-5646
    Email: dkitch@psu.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
Drexel University College of Medicine (Adult), Philadelphia, PA, 19129
Contact Information:
    Hillman, Judy
    Phone: (215) 762-5462
    Email: jhillman@drexelmed.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 (Adult), Charleston, SC, 29425
Contact Information:
    Warden, Ashley
    Phone: (843) 792-4349
    Email: jonesash@musc.edu

Sanford Medical Center (Pediatric), Sioux Falls, SD, 57117
Contact Information:
    Hanson, Dawn
    Phone: (605) 312-1033
    Email: Dawn.Hanson@sanfordhealth.org

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

Dell Children's Medical Center of Central Texas (Pediatric and Adult), Austin, TX, 78723
Contact Information:
    Brazil, Isolde
    Phone: (512) 380-9200 X206
    Email: IBrazil@accapa.com
Children's Medical Center of Dallas (Pediatric), Dallas, TX, 75235
Contact Information:
    Hebert, Andrew
    Phone: (214) 456-5618
    Email: andrew.hebert@childrens.com
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
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
Christus Santa Rosa Children's Hospital (Pediatric), San Antonio, TX, 78207
Contact Information:
    Tragus, Robin
    Phone: (210) 704-4447
    Email: tragus@uthscsa.edu

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

University of Virginia (Pediatric), Charlottesville, VA, 22908
Contact Information:
    Moss, Patricia
    Phone: (434) 243-2876
    Email: pcm2v@virginia.edu
Children's Hospital of the King's Daughters (Pediatric), Norfolk, VA, 23507
Contact Information:
    Perkins, Susan
    Phone: (757) 668-6416
    Email: PerkinSR@evms.edu
Virginia Commonwealth University (Pediatric), Richmond, VA, 23235
Contact Information:
    Ward, Matthew
    Phone: (804) 628-3093
    Email: wardmt@vcu.edu

Vermont Children's Hospital (Pediatric), Burlington, VT, 05401
Contact Information:
    Diehl, Sandra
    Phone: (802) 847-3884
    Email: Sandra.Diehl@uvm.edu

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
Froedtert & Medical College of Wisconsin (Adult), Milwaukee, WI, 53201
Contact Information:
    Harris, Rachel
    Phone: (414) 955-7030
    Email: racharris@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