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Rare And Cutaneous Non-Hodgkin Lymphoma Registry

21 Years
Open (Enrolling)
Lymphoma, Lymphoproliferative Disorder

Thank you

Trial Information

Rare And Cutaneous Non-Hodgkin Lymphoma Registry


- To determine the clinical features, treatment, and outcome of patients with rare or
cutaneous pediatric non-Hodgkin lymphoma (NHL).

- To determine the pathologic and biologic features of these diseases, including
molecular diagnostics and flow cytometry.

- To establish a bank of these pathologically reviewed diseases and make specimens of
blood and tissue available to qualified researchers.

- To determine sub-groups of these diseases that could be targeted for future biologic,
pathologic, or therapeutic studies.

OUTLINE: On study data will include presenting symptoms and signs, physical description of
the tumor if it is on the skin, results of metastatic evaluation, stage (if available),
blood count, markers, and the results of viral serologies. Any existing underlying
conditions that could predispose to lymphoma will also be noted.

Demographic and outcomes data will be stored and maintained by the COG Research Data Center.
Demographic data will be linked to the specimen data in the BPC database.

The approach of this study is prospective data collection, including central pathologic
review, relevant biologic studies, submission of material to the Biopathology Center (BPC)
and collection of diagnostic and outcome data. Participants will be registered with a
standard COG registration form for documentation of age, gender, race, date of diagnosis,
initial presentation, initial work-up, and stage according to the standard staging for the
specific disease, initial diagnostic procedure, and institutional diagnosis. Tissue will be
sent according to guidelines in Section 4.0. Follow-up data, including relapse or
progression and vital status will be reported annually for 5 years.

Patients will be followed annually for 5 years and data will be collected including vital
status, evidence/absence of disease, type of treatment received, progression/relapse and
whether the patient continues on study.

Inclusion Criteria


- Diagnosis of non-Hodgkin lymphoma (NHL)

- Any histology, except for Burkitt or Burkitt-like, diffuse large B-cell,
anaplastic large cell, or lymphoblastic lymphoma

- Primary CNS, primary cutaneous NHL, or lymphoproliferative diseases of any
histology allowed

- Pathological specimen from site not treated within the past 6 months

- Must have specimens available


- Not specified


- See Disease Characteristics

- At least 6 months since prior chemotherapy irradiation to study lesion

- At least 2 weeks since prior steroids

Type of Study:


Study Design:


Outcome Measure:

Clinical features, treatment, and outcomes

Safety Issue:


Principal Investigator

Amanda M. Termuhlen, MD

Investigator Role:

Study Chair

Investigator Affiliation:

Nationwide Children's Hospital



Study ID:




Start Date:

May 2005

Completion Date:

Related Keywords:

  • Lymphoma
  • Lymphoproliferative Disorder
  • adult diffuse small cleaved cell lymphoma
  • adult diffuse mixed cell lymphoma
  • grade 1 follicular lymphoma
  • grade 2 follicular lymphoma
  • grade 3 follicular lymphoma
  • childhood immunoblastic large cell lymphoma
  • adult immunoblastic large cell lymphoma
  • mantle cell lymphoma
  • marginal zone lymphoma
  • small lymphocytic lymphoma
  • primary central nervous system non-Hodgkin lymphoma
  • cutaneous B-cell non-Hodgkin lymphoma
  • cutaneous T-cell non-Hodgkin lymphoma
  • lymphoproliferative disorder
  • Lymphoma
  • Lymphoma, Non-Hodgkin
  • Lymphoproliferative Disorders
  • Lymphoma, Large-Cell, Immunoblastic



National Naval Medical Center Bethesda, Maryland  20889
Roswell Park Cancer Institute Buffalo, New York  14263
Children's Hospital of Philadelphia Philadelphia, Pennsylvania  19104
Mayo Clinic Cancer Center Rochester, Minnesota  55905
Barbara Ann Karmanos Cancer Institute Detroit, Michigan  48201
Hurley Medical Center Flint, Michigan  48503
Medical City Dallas Hospital Dallas, Texas  75230
University of Texas Health Science Center at San Antonio San Antonio, Texas  78284-7811
Presbyterian - St. Luke's Medical Center Denver, Colorado  80218
Van Elslander Cancer Center at St. John Hospital and Medical Center Grosse Pointe Woods, Michigan  48236
Vanderbilt-Ingram Cancer Center Nashville, Tennessee  37232-6838
Marshfield Clinic - Marshfield Center Marshfield, Wisconsin  54449
Newark Beth Israel Medical Center Newark, New Jersey  07112
New York Medical College Valhalla, New York  10595
Holden Comprehensive Cancer Center at University of Iowa Iowa City, Iowa  52242-1002
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Baltimore, Maryland  21231-2410
Cleveland Clinic Taussig Cancer Center Cleveland, Ohio  44195
Brooke Army Medical Center Fort Sam Houston, Texas  78234-6200
Children's National Medical Center Washington, District of Columbia  20010-2970
Children's Mercy Hospital Kansas City, Missouri  64108
St. Joseph's Hospital and Medical Center Paterson, New Jersey  07503
Children's Hospital and Regional Medical Center - Seattle Seattle, Washington  98105
Nemours Children's Clinic Jacksonville, Florida  32207
All Children's Hospital St. Petersburg, Florida  33701
Saint Jude Midwest Affiliate Peoria, Illinois  61637
Driscoll Children's Hospital Corpus Christi, Texas  78466
Cook Children's Medical Center - Fort Worth Fort Worth, Texas  76104
Phoenix Children's Hospital Phoenix, Arizona  85016-7710
Southern California Permanente Medical Group Downey, California  90242
Brooklyn Hospital Center Brooklyn, New York  11201
Palmetto Health South Carolina Cancer Center Columbia, South Carolina  29203
East Tennessee Children's Hospital Knoxville, Tennessee  37901
Children's Hospital of the King's Daughters Norfolk, Virginia  23507
Midwest Children's Cancer Center at Children's Hospital of Wisconsin Milwaukee, Wisconsin  53226
Arkansas Cancer Research Center at University of Arkansas for Medical Sciences Little Rock, Arkansas  72205
Carol G. Simon Cancer Center at Morristown Memorial Hospital Morristown, New Jersey  07962
Jonathan Jaques Children's Cancer Center at Miller Children's Hospital Long Beach, California  90801
Kaiser Permanente Medical Center - Oakland Sacramento, California  95825
Santa Barbara Cottage Children's Hospital Santa Barbara, California  93105
Lee Cancer Care of Lee Memorial Health System Fort Myers, Florida  33901
Nemours Children's Clinic - Orlando Orlando, Florida  32806
St. Joseph's Cancer Institute at St. Joseph's Hospital Tampa, Florida  33607
St. Vincent Indianapolis Hospital Indianapolis, Indiana  46260
Blank Children's Hospital Des Moines, Iowa  50309
Ochsner Cancer Institute at Ochsner Clinic Foundation New Orleans, Louisiana  70121
Alvin and Lois Lapidus Cancer Institute at Sinai Hospital Baltimore, Maryland  21215
Breslin Cancer Center at Ingham Regional Medical Center Lansing, Michigan  48910
Hackensack University Medical Center Cancer Center Hackensack, New Jersey  07601
Albert Einstein Cancer Center at Albert Einstein College of Medicine Bronx, New York  10461
NYU Cancer Institute at New York University Medical Center New York, New York  10016
SUNY Upstate Medical University Hospital Syracuse, New York  13210
Mission Hospitals - Memorial Campus Asheville, North Carolina  28801
Rainbow Babies and Children's Hospital Cleveland, Ohio  44106-5000
Baylor University Medical Center - Houston Houston, Texas  77030-2399
Methodist Children's Hospital of South Texas San Antonio, Texas  78229-3993
Primary Children's Medical Center Salt Lake City, Utah  84113-1100
Providence Cancer Center at Sacred Heart Medical Center Spokane, Washington  99220-2555
Edwards Comprehensive Cancer Center at Cabell Huntington Hospital Huntington, West Virginia  25701
Saint Peter's University Hospital New Brunswick, New Jersey  08901-1780
UNMC Eppley Cancer Center at the University of Nebraska Medical Center Omaha, Nebraska  68198-7680
Memorial Cancer Institute at Memorial Regional Hospital Hollywood, Florida  33021
Childrens Hospital Los Angeles Los Angeles, California  90027
Lucile Packard Children's Hospital at Stanford University Medical Center Palo Alto, California  95798
UCSF Helen Diller Family Comprehensive Cancer Center San Francisco, California  94115
Alfred I. duPont Hospital for Children Wilmington, Delaware  19803
Lombardi Comprehensive Cancer Center at Georgetown University Medical Center Washington, District of Columbia  20007
AFLAC Cancer Center and Blood Disorders Service of Children's Healthcare of Atlanta - Egleston Campus Atlanta, Georgia  30322
Curtis and Elizabeth Anderson Cancer Institute at Memorial Health University Medical Center Savannah, Georgia  31403-3089
University of Illinois Cancer Center Chicago, Illinois  60612-7243
Advocate Lutheran General Cancer Care Center Park Ridge, Illinois  60068-1174
Lucille P. Markey Cancer Center at University of Kentucky Lexington, Kentucky  40536-0093
CancerCare of Maine at Eastern Maine Medical Center Bangor, Maine  04401
Dana-Farber/Harvard Cancer Center at Dana-Farber Cancer Institute Boston, Massachusetts  02115
University of Mississippi Cancer Clinic Jackson, Mississippi  39216-4505
Siteman Cancer Center at Barnes-Jewish Hospital - Saint Louis St. Louis, Missouri  63110
Children's Hospital Omaha, Nebraska  68114-4113
CCOP - Nevada Cancer Research Foundation Las Vegas, Nevada  89109-2306
St. Barnabas Medical Center Cancer Center Livingston, New Jersey  07039
Cancer Institute of New Jersey at UMDNJ - Robert Wood Johnson Medical School New Brunswick, New Jersey  08903
Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center New York, New York  10032
Akron Children's Hospital Akron, Ohio  44308-1062
Nationwide Children's Hospital Columbus, Ohio  43205-2696
Dayton Children's - Dayton Dayton, Ohio  45404-1815
Oklahoma University Cancer Institute Oklahoma City, Oklahoma  73104
Geisinger Cancer Institute at Geisinger Health Danville, Pennsylvania  17822-0001
Penn State Children's Hospital Hershey, Pennsylvania  17033-0850
Children's Hospital of Pittsburgh of UPMC Pittsburgh, Pennsylvania  15213
Dell Children's Medical Center of Central Texas Austin, Texas  78723
West Virginia University Health Sciences Center - Charleston Charleston, West Virginia  25302
Riley's Children Cancer Center at Riley Hospital for Children Indianapolis, Indiana  46202-5225
Massachusetts General Hospital Boston, Massachusetts  02114-2617
University of Miami Sylvester Comprehensive Cancer Center - Miami Miami, Florida  33136
Duke Cancer Institute Durham, North Carolina  27710
Connecticut Children's Medical Center Hartford, Connecticut  06106
Children's Hospital Colorado Center for Cancer and Blood Disorders Aurora, Colorado  80045
Nemours Children's Clinic - Pensacola Pensacola, Florida  32504
Helen DeVos Children's Hospital at Spectrum Health Grand Rapids, Michigan  49503
Legacy Emanuel Children's Hospital Portland, Oregon  97227
Children's Hospital of Alabama at University of Alabama at Birmingham Birmingham, Alabama  35233