New Project (1 March 2024):
Establishing Consensus Guidelines for Role of Bone Marrow Biopsy in Diagnosis and Prognosis of Mycosis Fungoides and Sezary Syndrome

There is currently a lack of consensus regarding the role and utility of bone marrow biopsies in aspects such as diagnosis, staging, and management of Mycosis Fungoides and Sezary Syndrome. Much of the literature on this topic dates to the late 1990s and early 2000s. While both NCCN and EORTC recognize the value of such biopsies in select cases, their overall prognostic and management utility remain unclear. Bone marrow biopsies can potentially expose this patient population to additional pain, healthcare costs, and procedural risks. As a result, this survey-based research study seeks to identify practice patterns of CTCL healthcare providers regarding the recommendation of bone marrow biopsies in diagnosis, staging, and/or management of MF/SS. These findings can subsequently serve to establish unified guidelines. For more information, please contact Sima Rozati, MD PhD
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Ongoing Projects:
Guidelines for Clinical Trials of Non-MF/Non-SS Cutaneous Lymphoma

The USCLC, in conjunction with the International Society of Cutaneous Lymphomas (ISCL) and the European Organisation for. Research and Treatment of Cancer (EORTC), have developed guidelines for the conduct of clinical trials in cutaneous lymphomas other than MF and Sezary Syndrome (SS). This involves establishing endpoints and response criteria for those cutaneous lymphomas that are distinct from MF/SS in terms of clinical presentation, prognosis and treatment. This will allow planning for clinical trials to be expedited, and for comparison of results of clinical trials conducted anywhere in the world. It is our hope that this will help advance new treatments for these conditions.

National USCLC Registry of Patients with Cutaneous Lymphoma
The USCLC is currently developing a national registry for patients with cutaneous lymphoma. This will involve cooperation among not only academic sites that see the majority of such patients, but also involve those practitioners (dermatologists, oncologists, and radiation oncologists) who treat and follow these patients in private practice settings. This initiative will allow us, for the first time, to capture the number of patients being diagnosed with cutaneous B or T cell lymphoma and to determine where they are being treated. This will also allow us to track the overall course of these patients and to identify risk and prognostic factors to help determine what course of therapy is best for patients with cutaneous lymphoma.

There is a second goal of this registry which is to initiate a cooperative clinical trials network for cutaneous lymphoma among the academic centers involved in the registry. There are many important clinical trials that could be performed collaboratively by such a network that may not have obvious funding available from either pharmaceutical companies or federal grants. By establishing a cooperative USCLC Clinical Trials Network, physicians who take care of patients with cutaneous lymphoma can pool their efforts and carry out a central protocol with data being collected in our USCLC registry.  The USCLC can also perform collaborative trials looking at prognostic factors using tissue collected at each site and stored in the tissue banks at each institution (see below). This collaborative network will also facilitate doing pharmaceutical company sponsored Phase I and II studies and will enable the USCLC to better compete for federal grants for studies of cutaneous lymphoma.

USCLC Virtual Tissue Bank of Cutaneous Lymphoma
In order to determine if there are certain genetic or histological characteristics that can be used to help determine prognosis or best treatments for cutaneous lymphoma,  a tissue bank of samples of blood, skin or other tissue such as lymph nodes collected from patients with cutaneous lymphoma is necessary. A virtual tissue bank essentially allows each site to collect this tissue but to collaborate in studies on the collected tissue. Our USCLC Biomarkers Committee is setting up a standard protocol to allow the collection of these samples at all sites and to allow collaborative studies to be done on them. This is the first time this will have been done across all centers in the United States.

USCLC Phototherapy Guidelines for Mycosis Fungoides and Sézary Syndrome
Phototherapy is the most common skin-directed treatment for mycosis fungoides. The term phototherapy covers PUVA (psoralen plus long wave ultraviolet light A) and ultraviolet B (narrow and broad band UVB), the differences being the spectrum of light that is used and whether or not the photosensitizing drug psoralen is used before light exposure. There are no current standards for how to use these treatments in CTCL but rather most physicians treating CTCL have had to rely on the utilization of guidelines for phototherapy in psoriasis. This project will address specific guidelines for the use of phototherapy to treat CTCL including how to use with photosensitizing drugs such as retinoids, how and when to complete treatment in patients who have a clinical remission and how to direct maintenance regimens.

USCLC Clinical Guidelines for the Treatment of Pruritus in Cutaneous T Cell Lymphoma
Pruritus (itching) is a very common and often devastating problem for patients with lymphoma, particularly mycosis fungoides and Sézary syndrome. Aside from putting the lymphoma in remission, which is often very difficult to do with some aggressive forms of mycosis fungoides and with Sézary syndrome, pruritus is very difficult to control. This project will help to identify the etiological factors for pruritus in cutaneous lymphomas and review the various treatment options available to help make it manageable for affected patients.

USCLC Consensus Review of Cytotoxic T Cell Lymphomas
The USCLC Pathology Committee has an ongoing cooperative project focused on the definition, prognosis and treatment outcomes of patients with the more rare types of CTCL that are currently called cytotoxic T cell lymphomas.

Consensus Guidelines for CD30+ Cutaneous Lymphoprolerative Disorders: an ISCL, EORTC and USCLC joint initiative
There are two types of cutaneous lymphoma that have a T cell marker called CD30 on many of the abnormal lymphocytes seen on a skin biopsy. These disorders include both lymphomatoid papulosis (LyP) or primary cutaneous anaplastic large cell lymphoma (PCALCL). These cancers are much less common than mycosis fungoides and have a different but generally excellent clinical course and prognosis. There are few studies that have compared treatments for these conditions and even fewer clinical trials that have been performed. They are often treated with aggressive multiagent chemotherapy because of their histological appearance but clinical data would suggest that milder forms of therapy may be as, or more, effective.

To help correct this situation, the USCLC has joined forces with the International  Society for Cutaneous Lymphomas (ISCL) and the Cutaneous Lymphoma Task Force of the European Organization for Research and Treatment of Cancer (EORTC ) to develop not only evidence-based guidelines for the treatment of these CD30+ lymphomas but also to generate standardized endpoints to be utilized in clinical trials of these conditions. With the latter, we hope to encourage the initiation of new studies in these conditions.

USCLC Educational Initiatives
We have several different mechanisms for aiding in the education of both those involved in the care of patients with cutaneous lymphoma as well as patients themselves.

For physicians:

• The USCLC has an annual workshop held the day before the American Academy of Dermatology meeting in which we address different current issues that can advance patient care.  We have focused in past years on ways to standardize the evaluation, staging, and treatment of mycosis fungoides and Sézary syndrome and to develop standardized guidelines for conducting clinical trials in these disorders. More recently, we have taken on the important topics of treatment of pruritus and the use of phototherapy in mycosis fungoides.

• The first World Congress of Cutaneous Lymphoma was jointly sponsored by the USCLC, ISCL and Northwestern University in September 2010. This meeting focused on an update on the basic and clinical information on the entire breadth of cutaneous lymphoma as well as introduced a practical workshop for those physicians treating cutaneous lymphoma patients. The USCLC hopes to jointly sponsor with the ISCL a World Congress on Cutaneous Lymphoma at least every 2-3 years going forward.

• In the Publications section of USCLC website, we will be presenting key articles that would be of interest to those physicians taking care of cutaneous lymphoma patients. Where feasible, we will establish links to the original publications.
   

For patients:

• The USCLC Nurses, Physician Assistants and Nurse Practitioners Committee will offer suggestions for wound care and other important issues for patients on the USCLC website.

• A Frequently Asked Questions (FAQ) section for patients will be published on the USCLC website.

• Links to the Cutaneous Lymphoma Foundation Website and other helpful educational sites will be on our USCLC website.