Cutaneous T-cell lymphoma

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Cutaneous T-cell lymphoma
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Cutaneous T-cell lymphomas (CTCLs) are a group of disorders characterized by an abnormal accumulation of cancerous T-cells (a type of white blood cells) in the skin resulting in an itchy, red rash that can thicken or form a tumor. CTCLs belong to a larger group of disorders known asnon-Hodgkin's lymphomas. The most common types are mycosis fungoides and Sézary syndrome. In some cases, cancerous T-cells may spread to the lymph nodes and eventually to other body tissues and organs, potentially resulting in life-threatening complications. The specific signs and symptoms vary from person to person. The exact cause of these conditions is unknown.^[1]

References

Cutaneous T-Cell Lymphomas. National Organization for Rare Disorders (NORD). 2007 Available at: http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1124/viewAbstract. Accessed September 27, 2011.

Questions & Answers

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For more information about Cutaneous T-cell lymphoma click on the boxes below:

More Detailed Information	Organizations	Medical Products	Services	Scientific Conferences	Clinical Trials & Research


More Detailed Information (Found 6 resources) Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer General DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition. Click on the link to view the information. Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free. The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic. The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic. Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on this topic. PubMed is a searchable database of medical literature and lists journal articles that discuss Cutaneous T-cell lymphoma. Click on the link to view a sample search on this topic.

More Detailed Information (Found 6 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer

General
- DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition. Click on the link to view the information.
- Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free.
- The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public. Click on the link to view information on this topic.
- The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
- Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on this topic.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Cutaneous T-cell lymphoma. Click on the link to view a sample search on this topic.

Organizations Providing General Support \| Social Networking Websites
Organizations (Found 7 resources) Groups providing a wide range of services, supportive resources, and information. Disclaimer The Leukemia & Lymphoma Society 1311 Mamaroneck Avenue , Suite 310 White Plains, NY 10605 Toll-free: 800-955-4572 Telephone: 914-949-5213 Fax: 914-949-6691 E-mail: infocenter@lls.org Web site: http://www.lls.org/ Cutaneous Lymphoma Foundation PO Box 374 Birmingham, MI 48012 Telephone: 248-644-9014 Fax: 248-644-9014 E-mail: info@clfoundation.org Web site: http://www.clfoundation.org/ Organizations Providing General Support Genetic Alliance 4301 Connecticut Avenue NW Suite 404 Washington, DC 20008-2369 Telephone: 202-966-5557 Fax: 202-966-8553 E-mail: info@geneticalliance.org Web site: http://www.geneticalliance.org National Organization for Rare Disorders (NORD) 55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Toll-free: 1-800-999-6673 (voicemail only) Telephone: 203-744-0100 TTY: 203-797-9590 Fax: 203-798-2291 E-mail: orphan@rarediseases.org Web site: http://www.rarediseases.org/ Social Networking Websites DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story. Madisons Foundation P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/ RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support | Social Networking Websites

Organizations (Found 7 resources)
Groups providing a wide range of services, supportive resources, and information. Disclaimer

- The Leukemia & Lymphoma Society
  1311 Mamaroneck Avenue , Suite 310
  White Plains, NY 10605
  Toll-free: 800-955-4572
  Telephone: 914-949-5213
  Fax: 914-949-6691
  E-mail: infocenter@lls.org
  Web site: http://www.lls.org/
- Cutaneous Lymphoma Foundation
  PO Box 374
  Birmingham, MI 48012
  Telephone: 248-644-9014
  Fax: 248-644-9014
  E-mail: info@clfoundation.org
  Web site: http://www.clfoundation.org/
Organizations Providing General Support
- Genetic Alliance
  4301 Connecticut Avenue NW
  Suite 404
  Washington, DC 20008-2369
  Telephone: 202-966-5557
  Fax: 202-966-8553
  E-mail: info@geneticalliance.org
  Web site: http://www.geneticalliance.org
- National Organization for Rare Disorders (NORD)
  55 Kenosia Avenue
  PO Box 1968
  Danbury, CT 06813-1968
  Toll-free: 1-800-999-6673 (voicemail only)
  Telephone: 203-744-0100
  TTY: 203-797-9590
  Fax: 203-798-2291
  E-mail: orphan@rarediseases.org
  Web site: http://www.rarediseases.org/
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- Madisons Foundation
  P.O. Box 241956
  Los Angeles, CA 90024
  Telephone: 310-264-0826
  Fax: 310-264-4766
  E-mail: getinfo@madisonsfoundation.org
  Web site: http://www.madisonsfoundation.org/
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Medical Products (Found 3 resources)
Disclaimer

U.S. Food and Drug Administration

The Office of Orphan Products Development (OOPD)

The medications listed in the table below have been approved by the Food and Drug Administration (FDA) for treatment of this condition. The FDA Office of Orphan Products Development designates "orphan products" for those that treat rare diseases affecting fewer than 200,000 Americans. The table below may not be an exhaustive list of drugs or products used to treat this condition. There may be other products available that are not considered orphan products. To search all FDA approved drugs, visit Drugs@FDA You can find orphan products used to treat other conditions by searching the Orphan Drug Product Designation database.

Generic Name	Trade Name (Manufacturer Name)	Indication	Resources
Bexarotene	Targretin® (topical) (Eisai Medical Research, Inc.)	Treatment of cutaneous manifestations of cutaneous T-cell lymphoma in patients who are refractory to at least one prior systemic therapy.	Drug Information Portal MedlinePlus
Denileukin diftitox	Ontak® (Eisai Medical Research, Inc.)	Treatment of patients with persistent or recurrent cutaneous T-cell lymphoma whose malignant cells express the CD25 component of the IL-2 receptor.	Drug Information Portal
Romidepsin	Istodax (Gloucester Pharmaceuticals, Inc.)	Treatment of cutaneous T-cell lymphoma (CTCL) in patients who have received at least one prior systemic therapy	Drug Information Portal


Services (Found 2 resources) Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories. Disclaimer Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more. Parent Resources The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.

Services (Found 2 resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories. Disclaimer

- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
Parent Resources
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.


Scientific Conferences (Found 5 resources) Resources where you can find information on completed and upcoming scientific conferences and programs. Disclaimer Past Conferences RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012 Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases. Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010 Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts. VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010 Location: Palais Rouge Convention Center, Palermo, Buenos Aires Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities. Etiology of Rare Subtypes of Non-Hodgkin Lymphoma: An Interlymph Workshop, July 28, 2008 - July 31, 2008 Description: The overarching goals of this conference were to identify specific risk factors that explain most of the occurrences of each of the rare NHL subtypes and to ascertain specific risk factors that may be linked with more than one subtype to better understand the determinants of lymphomagenesis. Scientific collaborations achieved from this meeting were aimed at enhancing interdisciplinary research in this understudied area of research. Immunotherapy for Cutaneous T-Cell Lymphoma (CTCL), May 6, 2006 - May 7, 2006 Location: Holiday Inn Express, Philadelphia, PA Description: The cutaneous T-cell lymphomas represent a group of rare, non-Hodgkin’s lymphomas that are primarily localized to skin or have overt skin manifestations along with internal involvement. They are represented by mycosis fungoides, Sezary syndrome, CD30-positive skin lymphomas, and other variants. No treatment has been shown to be curative. Although most individuals have indolent disease, those with advanced disease obtain only partial, short-term benefit from chemotherapy and often die of disease or its most severe complication—infection and sepsis. There are several reasons to believe that cutaneous T-cell lymphomas may respond to or benefit from immunotherapy or immunoregulatory therapy. The goals of this conference were to educate the audience about new immuno-based therapies and strategies for CTCL and to bring together researchers and clinicians who treat CTCL to formulate strategies for clinical trials based on information disseminated in the meetings.

Scientific Conferences (Found 5 resources)
Resources where you can find information on completed and upcoming scientific conferences and programs. Disclaimer

Past Conferences
- RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
  Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
  Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
- Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010
  Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
- VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010
  Location: Palais Rouge Convention Center, Palermo, Buenos Aires
  Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
- Etiology of Rare Subtypes of Non-Hodgkin Lymphoma: An Interlymph Workshop, July 28, 2008 - July 31, 2008
  Description: The overarching goals of this conference were to identify specific risk factors that explain most of the occurrences of each of the rare NHL subtypes and to ascertain specific risk factors that may be linked with more than one subtype to better understand the determinants of lymphomagenesis. Scientific collaborations achieved from this meeting were aimed at enhancing interdisciplinary research in this understudied area of research.
- Immunotherapy for Cutaneous T-Cell Lymphoma (CTCL), May 6, 2006 - May 7, 2006
  Location: Holiday Inn Express, Philadelphia, PA
  Description: The cutaneous T-cell lymphomas represent a group of rare, non-Hodgkin’s lymphomas that are primarily localized to skin or have overt skin manifestations along with internal involvement. They are represented by mycosis fungoides, Sezary syndrome, CD30-positive skin lymphomas, and other variants. No treatment has been shown to be curative. Although most individuals have indolent disease, those with advanced disease obtain only partial, short-term benefit from chemotherapy and often die of disease or its most severe complication—infection and sepsis. There are several reasons to believe that cutaneous T-cell lymphomas may respond to or benefit from immunotherapy or immunoregulatory therapy. The goals of this conference were to educate the audience about new immuno-based therapies and strategies for CTCL and to bring together researchers and clinicians who treat CTCL to formulate strategies for clinical trials based on information disseminated in the meetings.


Clinical Trials & Research (Found 3 resources) Resources where you may find research studies and clinical trials. Disclaimer ClinicalTrials.gov lists trials that are studying or have studied Cutaneous T-cell lymphoma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies. NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate. Patient Registry ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Advancing Translational Sciences.

Clinical Trials & Research (Found 3 resources)
Resources where you may find research studies and clinical trials. Disclaimer

- ClinicalTrials.gov lists trials that are studying or have studied Cutaneous T-cell lymphoma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
Patient Registry
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Advancing Translational Sciences.