for people ages up to 21 years (full criteria)
at San Francisco, California and other locations
study started
estimated completion:



RATIONALE: Collecting and storing samples of tissue from patients with cancer to test in the laboratory may help the study of cancer in the future.

PURPOSE: This research study is collecting and storing tissue samples from patients with rare or cutaneous non-Hodgkin lymphoma.

Official Title

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.


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 Lymphoma, Non-Hodgkin Lymphoproliferative Disorders biologic sample preservation procedure informational intervention


For people ages up to 21 years


  • 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


  • UCSF Helen Diller Family Comprehensive Cancer Center
    San Francisco California 94115 United States
  • Lucile Packard Children's Hospital at Stanford University Medical Center
    Palo Alto California 95798 United States


in progress, not accepting new patients
Start Date
Completion Date
Children's Oncology Group
Study Type
Last Updated
December 11, 2017