Hairy cell leukemia

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U.S. Department of Health & Human Services

Genetic and Rare Diseases Information Center (GARD)

Leukemic reticuloendotheliosis
HCL

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Hairy cell leukemia
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Hairy cell leukemia is a rare, slow-growing cancer of the blood in which the bone marrow makes too many B cells (lymphocytes), a type of white blood cell that fights infection. The condition is named after these excess B cells which look 'hairy' under a microscope. As the number of leukemia cells increases, fewer healthy white blood cells, red blood cells and platelets are produced. The underlying cause of this condition is unknown. While there is no cure, treatment can lead to remission which can last for years.^[1]^[2]

References

Hairy cell leukemia. MayoClinic.com. March 21, 2012 Available at: http://www.mayoclinic.com/print/hairy-cell-leukemia/DS00673/DSECTION=all&METHOD=print. Accessed April 3, 2012.
Dugdale DC, Mason JR. Hairy cell leukemia. MedlinePlus. September 6, 2010 Available at: http://www.nlm.nih.gov/medlineplus/ency/article/000592.htm. Accessed April 3, 2012.

Questions & Answers

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For more information about Hairy cell leukemia click on the boxes below:

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


More Detailed Information (Found 7 resources) Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer General MayoClinic.com has an article related to hairy cell leukemia. Click on the link to gain access to this information. Medscape Reference has two articles on this topic; a general article and an article related to treatment protocols. You may need to register to view the information online, but registration is free. Click on the links above to view the articles from this medical reference Web site. MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information. 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 Hairy cell leukemia. Click on the link to view a sample search on this topic.

More Detailed Information (Found 7 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer

General
- MayoClinic.com has an article related to hairy cell leukemia. Click on the link to gain access to this information.
- Medscape Reference has two articles on this topic; a general article and an article related to treatment protocols. You may need to register to view the information online, but registration is free. Click on the links above to view the articles from this medical reference Web site.
- MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
- 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 Hairy cell leukemia. Click on the link to view a sample search on this topic.

Organizations Providing General Support \| Social Networking Websites
Organizations (Found 5 resources) Groups providing a wide range of services, supportive resources, and information. Disclaimer 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 5 resources)
Groups providing a wide range of services, supportive resources, and information. Disclaimer

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 2 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
Cladribine	Leustatin (injection) (Ortho Biotech)	Treatment of hairy cell leukemia.	Drug Information Portal MedlinePlus
Pentostatin for injection	Nipent® (SuperGen, Inc.)	Single agent treatment for adult patients with alpha-interferon-refractory hairy cell leukemia.	Drug Information Portal MedlinePlus


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 4 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. Treatment of Hairy Cell Leukemia in its Second Half-Century, April 26, 2010 - April 27, 2010 Location: Wilson Hall (Building 1), 3rd floor, Bethesda, MD Description: Goals of this conference were to (1) disseminate current knowledge of the standard treatment of hairy cell leukemia (HCL); (2) identify the evidence (or lack thereof) on which current treatment practices are based; (3) determine needs and opportunities for clinical research to improve HCL treatment; (4) disseminate results of newer diagnostic techniques, including flow cytometry, polymerase chain reaction (PCR), and serum markers, to allow decreased reliance on bone marrow biopsy; (5) discuss recent advances in HCL biology, including the molecular characterization of HCL cells with implications for disease origination/prognosis; (6) discuss new treatments for relapse/refractory disease, including investigational agents; (7) improve patient access to treatment and clinical trials; and (8) discuss the evolving activities of the HCL Consortium, including establishing a new HCL Web site to improve access to knowledge, care givers, treatment, and clinical trials. For additional information please contact Dr. Robert Kreitman at kreitmar@mail.nih.gov 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.

Scientific Conferences (Found 4 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.
- Treatment of Hairy Cell Leukemia in its Second Half-Century, April 26, 2010 - April 27, 2010
  Location: Wilson Hall (Building 1), 3rd floor, Bethesda, MD
  Description: Goals of this conference were to (1) disseminate current knowledge of the standard treatment of hairy cell leukemia (HCL); (2) identify the evidence (or lack thereof) on which current treatment practices are based; (3) determine needs and opportunities for clinical research to improve HCL treatment; (4) disseminate results of newer diagnostic techniques, including flow cytometry, polymerase chain reaction (PCR), and serum markers, to allow decreased reliance on bone marrow biopsy; (5) discuss recent advances in HCL biology, including the molecular characterization of HCL cells with implications for disease origination/prognosis; (6) discuss new treatments for relapse/refractory disease, including investigational agents; (7) improve patient access to treatment and clinical trials; and (8) discuss the evolving activities of the HCL Consortium, including establishing a new HCL Web site to improve access to knowledge, care givers, treatment, and clinical trials. For additional information please contact Dr. Robert Kreitman at kreitmar@mail.nih.gov
- 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.


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 Hairy cell leukemia. 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 Hairy cell leukemia. 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.