Trial Information

Rare And Cutaneous Non-Hodgkin Lymphoma Registry

OBJECTIVES:

- 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.