Individuals with a past diagnosis of severe combined immune deficiency (including many cases of “leaky SCID”, Omenn syndrome, and reticular dysgenesis) who have undergone blood and marrow transplant, gene therapy, or enzyme replacement in the past may be eligible for 6902. The purpose of 6902 is very similar to 6901, except 6902 is looking backwards at what has already been done in the past (compared to 6901 which is looking into the future). Over 800 patients with SCID are expected to be enrolled on 6902. This makes 6902 the largest study ever to describe outcomes for patients with SCID treated at many different hospitals around North America.
One of the most important components of the 6902 study is the “cross sectional” study. Patients who have received their treatments (BMT, gene therapy, enzyme replacement) many years ago are asked to come back to the hospital where they were treated. During this visit, additional research blood work is drawn and information is gathered regarding long-term transplant outcomes such as infections, graft-versus-host disease, autoimmune diseases, and quality of life. This will allow PIDTC researchers to better understand long-term outcomes from procedures that occurred many years ago (sometimes over 30 years ago) – something that is not possible at the present time with 6901. This will help researchers to best design new treatments and clinical trials in the future for children with SCID.
Total Enrollment: 750
Participating Sites
Alberta Children's Hospital
28 Oki Drive NW
Calgary, Alberta, Canada, T3B 6A8
https://www.albertahealthservices.ca/ach/ach.aspx
Contact:
Transplanter:
Victor
Lewis
Immunologist: Nicola Wright
Alfred I. duPont Hospital for Children/Nemours
1600 Rockland Road
Wilmington, Delaware, United States, 19803
https://www.nemours.org/locations/wilmington-ai-dupont-childrens-hospital.html
Contact:
Transplanter:
Emi
Caywood
Immunologist: Gretchen Harmon
Ann & Robert H. Lurie Children's Hospital of Chicago
225 E Chicago Avenue
Chicago, Illinois, United States, 60611
https://www.luriechildrens.org
Contact:
Transplanter:
Sonali
Chaudhury
Immunologist: Aisha Ahmed
Baylor College of Medicine/Texas Children's Hospital
1 Baylor Plaza
Houston, Texas, United States, 77030
https://www.bcm.edu/
Contact:
Immunologist:
Imelda Celine
Hanson
Boston Children's Hospital
300 Longwood Avenue
Boston, Massachusetts, United States, 02115
https://www.childrenshospital.org/
Contact:
Immunologist:
Craig
Platt
craig.platt@childrens.harvard.edu
Transplanter: Susan Prockop
susan.prockop@childrens.harvard.edu
Transplanter: Malika Kapadia
Cardinal Glennon Children's Hospital
1465 S Grand Boulevard
Saint Louis, Missouri, United States, 63104
https://www.ssmhealth.com/locations/cardinal-glennon-childrens-hospital
Children's & Women's Health Centre of British Columbia
4500 Oak Street
Vancouver, British Columbia, Canada, V6H 3N1
http://www.bcwomens.ca/
Contact:
Immunologist:
Stuart
Turvey
Immunologist: Jacob Rozmus
Children's Healthcare of Atlanta: AFLAC Cancer Center
1405 Clifton Road NE, 4th Floor, Tower 1
Atlanta, Georgia, United States, 30322
https://www.choa.org
Contact:
Immunologist:
Lisa
Kobrynski
Transplanter: Shanmuganathan Chandrakasan
shanmuganathan.chandrakasan@emory.edu
Transplanter: Suhag Parikh
Immunologist: Niraj Patel
Children's Hospital Colorado
13123 E 16th Avenue, B115
Aurora, Colorado, United States, 80045
https://www.childrenscolorado.org/locations/anschutz-medical-campus-aurora/
Contact:
Transplanter:
Hesham
Eissa
hesham.eissa@childrenscolorado.org
Transplanter: Christopher McKinney
Children's Hospital Los Angeles
4650 Sunset Boulevard
Los Angeles, California, United States, 90027
https://www.chla.org/
Contact:
Transplanter:
Neena
Kapoor
Immunologist: Neema Izadi
Children's Hospital of Wisconsin
8915 W Connell Court
Milwaukee, Wisconsin, United States, 53226
https://childrenswi.org/location-directory/locations/hospitals/milwaukee-hospital
Contact:
Immunologist:
John M.
Routes
Transplanter: Larisa Broglie
Children's Hospital/LSUHSC, New Orleans
200 Henry Clay Avenue, Suite 4109
New Orleans, Louisiana, United States, 70118
https://www.chnola.org
Contact:
Transplanter:
Lolie
Yu
Immunologist: Ken Paris
Transplanter: Zachary Louis LeBlanc
Immunologist: Luke Wall
Children's National Medical Center
111 Michigan Ave NW
Washington, District of Columbia, United States, 20010
https://childrensnational.org
Contact:
Transplanter:
Blachy Davila
Saldana
bjdavilas1@childrensnational.org
Immunologist: Michael Keller
Immunologist: Vanessa Bundy
Cincinnati Children's Hospital Medical Center
3333 Burnett Avenue
Cincinnati, Ohio, United States, 45229
https://www.cincinnatichildrens.org/
Contact:
Transplanter w/ Immunology focus:
Jack
Bleesing
Transplanter w/ Immunology focus: Rebecca Marsh
Transplanter w/ Immunology focus: Sharat Chandra
Duke University Medical Center
2301 Erwin Road
Durham, North Carolina, United States, 27710
https://www.dukehealth.org/locations/duke-university-medical-center
Contact:
Immunologist:
Rebecca H.
Buckley,
MD
+1 919 684 2922
Immunologist: Talal Mousallem
Transplanter: Vinod Prasad
Hospital for Sick Children (SickKids)
555 University Avenue
Toronto, Ontario, Canada, M5G 1X8
https://www.sickkids.ca/
Contact:
Immunologist:
Eyal
Grunebaum,
MD
Johns Hopkins All Children's Hospital
601 5th Street South, 3rd Floor
St. Petersburg, Florida, United States, 33701
https://www.jhu.edu/
Contact:
Transplanter:
Deepak
Chellapandian
Immunologist: Jolan Walter
Maria Fareri Children's Hospital
100 Woods Road
Valhalla, New York, United States, 10595
https://www.mariafarerichildrens.org
Contact:
Transplanter:
Mitchell S.
Cairo,
MD
Immunologist: Subhadra Siegel
Mayo Clinic Rochester
200 First Street SW
Rochester, Minnesota, United States, 55905
https://www.mayoclinic.org/patient-visitor-guide/minnesota
Contact:
Immunologist:
Anvi
Joshi
Memorial Sloan Kettering Cancer Center
1275 York Avenue
New York, New York, United States, 10065
https://www.mskcc.org/
Contact:
Transplanter/Immunologist:
Joseph
Oved
National Institute of Allergy and Infectious Diseases
5601 Fishers Lane, MSC 9806
Bethesda, Maryland, United States, 20892
https://www.niaid.nih.gov/
Contact:
Immunologist:
Harry
Malech,
MD
+1 301 480 6916
Transplanter: Elizabeth M. Kang, MD
+1 301 402 7567
Transplanter: Sung-Yun Pai
Oregon Health & Science University
3181 S.W. Sam Jackson Park Road
Portland, Oregon, United States, 97239-3098
https://www.ohsu.edu
Contact:
Transplanter:
Evan
Shereck
Immunologist: Tyler Yates
Phoenix Children's Hospital: Center for Cancer and Blood Disorders
1919 E Thomas Road
Phoenix, Arizona, United States, 85016
https://appointments.phoenixchildrens.com/Appointments/FindPatient
Contact:
Transplanter:
Roberta H.
Adams
Transplanter w/ Immunology focus: Holly Miller
Immunologist: Keith Sacco
Primary Children's Hospital
100 N. Mario Capecchi Drive
Salt Lake City, Utah, United States, 84113
https://www.utah.edu/
Contact:
Transplanter/Immunologist:
Ahmad
Rayes
Transplanter: Erin Morales
Transplanter/Immunologist: Michael Pulsipher
Seattle Children's Hospital
1100 Fairview Avenue N, Mailstop D1-100
Seattle, Washington, United States, 98109
https://www.seattlechildrens.org/
Contact:
Transplanter:
Lauri M.
Burroughs,
MD
Transplanter: Aleksandra Petrovic
aleksandra.petrovic@seattlechildrens.org
Immunologist: Eric Allenspach
eric.allenspach@seattlechildrens.org
Immunologist: Karin Chen
St. Jude Children's Research Hospital
262 Danny Thomas Place
Memphis, Tennessee, United States, 38105
https://www.stjude.org/
Contact:
Transplanter:
Ewelina
Mamcarz
Immunologist: Jay Lieberman
University of Michigan Health System
500 S State Street
Ann Arbor, Michigan, United States, 48109
https://www.uofmhealth.org
Contact:
Transplanter:
Gregory
Yanik
Transplanter/Immunologist: Mark Vander Lugt
University of Rochester
500 Joseph C. Wilson Boulevard
Rochester, New York, United States, 14627
https://www.rochester.edu/
Contact:
Transplanter:
Jeffrey
Andolina
jeffrey_andolina@urmc.rochester.edu
Immunologist: Katherine Tuttle
katherine_tuttle@urmc.rochester.edu
ID Physician: Geoffrey Weinberg