CTCL Global Care Collaborative Pioneers Consensus for Improving Diagnosis and Care in Cutaneous T-Cell Lymphoma (CTCL)

  • Patient advocacy groups form global collaborative to address unmet needs in CTCL, with support from Kyowa Kirin
  • Consensus statement highlights 12 recommendations for healthcare authorities, policymakers, hospitals, and clinicians to drive positive change for the global CTCL patient community

Princeton, N.J., 14 May 2024 – Kyowa Kirin, Inc. a wholly owned subsidiary of Kyowa Kirin Co. Ltd, today announced the publication of a patient-focused global consensus statement – ‘Time to Act: A Global Patient-Focused Consensus for Improving the Care of Cutaneous T-Cell Lymphoma (CTCL)’.

The statement calls on healthcare authorities, policymakers, hospitals, and clinicians worldwide to undertake 12 specific actions to enhance awareness, diagnosis, care, and support for people impacted by CTCL, which encompasses several types of rare blood cancer that primarily manifest in the skin. 1, 2

The consensus statement is the inaugural output of the CTCL Global Care Collaborative, a newly established group united by a shared mission to reduce the time to an accurate diagnosis and improve the quality of care and support for people living with CTCL. Kyowa Kirin provided funding to help the group organize and advance its goals.

The Collaborative is focused on driving long-term change in four priority areas – improving awareness of CTCL amongst healthcare professionals (HCPs); improving time to diagnosis and awareness of disease staging; ensuring all patients have access to appropriate care; and empowering patients with the information they need to make informed decisions. The insights informing the group’s work reflect global perspectives, the unique needs of the patient community, and international nuances.

“As a patient organization that interacts with people from around the world, we see firsthand the challenges that our patient community members face navigating their disease,” says Susan Thornton, CEO of the Cutaneous Lymphoma Foundation. “We are proud to join arms with our global patient advocacy colleagues to call attention to changes that we believe will improve lives of people impacted by cutaneous lymphoma, wherever they live.”

CTCL can have debilitating physical, emotional, and social challenges. These are difficult enough to contend with, but their burden may be compounded by issues in testing, diagnosis, and care. Notably, in its most prominent subtype of mycosis fungoides (MF), the average time to diagnosis is 3-4 years. 3, 4 Like many rare diseases, issues in diagnosis may come from limited awareness and symptoms being mistaken for more common conditions. Once diagnosed, further health system issues, such as inaccurate disease staging and inequitable access to care, represent additional barriers for some patients. The Collaborative is dedicated to addressing these unmet needs globally.

“Every day, our teams see the impact that CTCL has on patients and their families across our region,” says Greg Palko, Vice President, North America Regional Franchise Head, Oncology. “We are hopeful that the systemic changes suggested in this Consensus Statement will increase awareness and help address the unmet needs of this patient community that we care deeply about.”

To learn more about CTCL, the Global Care Collaborative, and the 12 recommendations, click here.

About the CTCL Global Care Collaborative

The CTCL Global Care Collaborative aims to address the unmet needs faced by people living with CTCL, which encompasses several types of rare blood cancer that primarily manifest in the skin. 1, 2

The Collaborative is organized and funded by Kyowa Kirin, a co-founder of the group.

The Collaborative is comprised of global patient organizations – the Cutaneous Lymphoma Foundation and Lymphoma Coalition ; national patient organizationsLymphoma Action (UK), the Portuguese Association against Leukemia and Lymphoma – APCL (Portugal), the Spanish Association of People Affected by Lymphoma, Myeloma and Leukemia – AEAL (Spain), Stichting Huid Lymfoom (the Netherlands) and Haukrebs-Netzwerk Deutschland e.V. (Germany); Selbsthilfe Kutane Lymphome (Germany), Korea Blood Disease and Cancer Association (South Korea), and House086 (China); and Kyowa Kirin, a Japan based Global Specialty Pharmaceutical Company.

The physical and psychosocial burdens of CTCL can have a profound impact on those living with the disease. However, these burdens may be compounded by problems with testing, diagnosis, and care. This is why the Collaborative’s mission is to drive reform of healthcare systems globally and resolve the unmet needs that have persisted for those living with CTCL.

About Cutaneous T-Cell Lymphoma (CTCL)

CTCL can have debilitating physical, emotional, and social impacts. These are difficult enough to contend with, but their burden may be compounded by issues in testing, diagnosis, and management.

CTCL encompasses T-cell lymphomas affecting the skin. 2 CTCL is a rare subset of non-Hodgkin lymphomas.5

The best studied subtype of CTCL is MF, which accounts for 60% of CTCL cases.1 Beyond MF, there are various other subtypes of CTCL, including Sézary syndrome, lymphomatoid papulosis, primary cutaneous anaplastic large cell lymphoma, and pagetoid reticulosis.6

CTCL can manifest as persistent skin patches and / or raised, scaly plaques, often with constant itching.7, 8 More pronounced lesions can also occur.9 In MF, these symptoms and signs can frequently be mistaken for more common, benign conditions like psoriasis or eczema. 3 As a result in MF, it can take 3-4 years on average for patients to receive a confirmed diagnosis.3,4

CTCL is characterized by cancerous white blood cells (T-cells) primarily manifesting in the skin.2 For some patients, the disease may evolve to also affect the blood, lymph nodes, and internal organs.10 CTCL is treatable, but not generally considered to be curable.2

About Kyowa Kirin

Kyowa Kirin aims to discover and deliver novel medicines and treatments with life-changing value. As a Japan-based Global Specialty Pharmaceutical Company, we have invested in drug discovery and biotechnology innovation for more than 70 years and are currently working to engineer the next generation of antibodies and cell and gene therapies with the potential to help patients with high unmet medical needs, focusing on bone & mineral, intractable hematological diseases/hemato oncology, and rare diseases. A shared commitment to our values, to sustainable growth, and to making people smile unites us across the globe.

You can learn more about the business of Kyowa Kirin at: www.kyowakirin.com


Susan Thiele
Sr. Director, Communications & Advocacy, Global Commercial Franchises
Phone: +1 (908) 736-4514


1Willemze R, et al. The 2018 update of the WHO-EORTC classification for primary cutaneous lymphomas. Blood. 2019;133(16):1703-1714.
2Cleveland Clinic. Cutaneous T-Cell Lymphoma. Available from https://my.clevelandclinic.org/health/diseases/17940-cutaneous-t-cell-lymphoma. Last Accessed: May 2024.
3 Wilcox RA. Cutaneous T-cell lymphoma: 2016 update on diagnosis, risk-stratification, and management. Am J Hematol. 2016;91(1):151-65.
4Scarisbrick J, et al. The PROCLIPI international registry of early-stage mycosis fungoides identifies substantial diagnostic delay in most patients. Br J Dermatol. 2019;181(20):350-357.
5Trautinger F, et al. European Organisation for Research and Treatment of Cancer consensus recommendations for the treatment of mycosis fungoides/Sézary syndrome - Update 2017. Euro J Cancer. 2017;77:57-74.
6Girardi M, et al. The Pathogenesis of Mycosis Fungoides. New Eng J Med. 2004;350(19):1978-88.
7Demierre M-F, et al. Significant impact of cutaneous T-cell lymphoma on patients’ quality of life. Cancer. 2006;107(10):2504-2511.
8Ni X, et al. Reduction of regulatory T cells by Mogamulizumab, a defucosylated anti-CC chemokine receptor 4 antibody, in patients with aggressive/refractory mycosis fungoides and Sézary syndrome. Clin Cancer Res. 2014;21(2):274-85.
9Bagherani, N, et al. An Overview of Cutaneous T-Cell Lymphomas. F1000 Research. 2016;5:F1000 Faculty Rev-1882.
10 Olsen E, et al. Revisions to the staging and classification of mycosis fungoides and Sezary syndrome: a proposal of the International Society for Cutaneous Lymphomas (ISCL) and the cutaneous lymphoma task force of the European Organization of Research and Treatment of Cancer (EORTC). Blood. 2007;110(6):1713-22.

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