USCLC Registry

Welcome to the USCLC Registry

There is a tremendous need to improve the treatment and outcome of patients with cutaneous lymphoma and a collaborative, cooperative, multidisciplinary effort is necessary to do so. This goal necessarily starts with a means of collecting information on patients with all types of cutaneous lymphoma using a standardized lexicon and methodology. The diagnosis, evaluation, staging and response criteria for all types of cutaneous lymphoma have recently been either amended or developed by the United States Consortium for Cutaneous Lymphomas (USCLC) and its international cutaneous lymphoma partners and published or submitted for publication. The USCLC is a dedicated group of physicians of various specialties (dermatologists, oncologists, radiation oncologists and pathologists) who collectively evaluate and treat the majority of cutaneous lymphoma patients in the United States and who have established the creation of a national registry for cutaneous lymphoma as the primary goal for USCLC. The USCLC Registry is a unique initiative at the grass roots level of patient care that will advance the prognosis, survival and quality of life of patients with all types of cutaneous lymphoma.

Specifically, our goals for the USCLC Registry are the following:

Primary goals
  1. To determine the incidence and geographic locations of patients with the various subtypes of cutaneous lymphoma in the US
  2. To determine and validate factors for each type of cutaneous lymphoma that may affect prognosis including those related to:
    1. Staging
    2. Pathologic and molecular features of skin, lymph nodes, bone marrow or internal organs
    3. Radiologic characteristics including various types of imaging
    4. Blood tumor burden or blood markers of significance
  3. To determine the efficacy of various treatments or interventions (monotherapies or in combination) for patients with each subtype of cutaneous lymphoma
  4. To enable patients with the various subtypes of cutaneous lymphoma to input data on the effect of their disease and treatment(s) on their and their families' quality of life
  5. To enhance the communication between patients with cutaneous lymphoma and the physicians directing their care
Secondary Goals
  1. To compare and contrast treatment algorithms between study sites
  2. To develop and validate new quality of life metrics for patients with cutaneous lymphoma
  3. To develop meaningful outcome measures that are of value to physician and patient alike
  4. To provide a platform for clinical trials of patients with cutaneous lymphoma to facilitate collaborative research with other national and international organizations
  5. To encourage development of a virtual tissue bank and studies on potential biomarkers of each cutaneous lymphoma subtype by encouraging collection of blood/tissue at sites who are participating in the clinical registry
  6. To educate physicians, by their participation in this registry, with best current approaches and treatments of these cutaneous lymphomas and to encourage participation in research studies of same
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Frequently Asked Questions (FAQs)

Thank you so much for your interest in participating in the USCLC Registry. Your participation is testimony to the dedication you have to improving the lives of all your cutaneous lymphoma patients.

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Registry Committee

Chairman, Elise A. Olsen, MD
Co-Chairman, Francine Foss, MD

Madeleine Duvic, MD
Larisa Geskin, MD
Joan Guitart, MD
Youn Kim, MD
Lauren Pinter-Brown, MD
Mark Pittelkow, MD
Susan Thornton
Gary Wood, MD

Answers Ahead:
Jeff Schwarz