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RecruitingObservational

Prospective Multicenter International Observational Study for Determination of a Cutaneous Lymphoma International Prognostic Index Model and Impact of Major Therapies in Patients With Advanced Mycosis Fungoides and Sézary Syndrome

NCT ID: NCT02848274Sponsor: Stanford UniversityLast updated: 2025-10-22

Summary

The purpose of the study is to develop a prognostic index model for the rare disease of mycosis fungoides and sezary syndrome. This will be done by collecting standardized clinical data at various institutions. The investigators hope this will enable the identification of low- and high-risk groups for survival in order to improve patient care and outcome.

Outcome measures

Primary

  • Overall survival (OS)

    Time frame: date of diagnosis to death from any cause, up to two years

Eligibility criteria

Sex: AllAge: All agesHealthy volunteers: No
Inclusion Criteria * Diagnosis of advanced stage MF or SS (Stages IIB - IVB) within 6 months of presentation to the participating center * Patients that are expected to have care administered at the participating center or jointly with referring physician(s) where follow-up data would be available Exclusion Criteria * Patients diagnosed with early stage MF/SS (Stages IA-IIA) before progressing to advanced stage * Patients diagnosed with advanced MF/SS more than 6 months prior to initial presentation to the participating center * Exclude one-time consultation type of new patients.

Study locations (7)

City of Hope

Duarte, California, 91010

Recruiting
Christiane Querfeld · Contact
cquerfeld@coh.org

Stanford University, School of Medicine

Palo Alto, California, 94305

Recruiting
Tatiana Neal · Contact
650-709-7838tatianan@stanford.edu
Youn H Kim · Principal Investigator

University of Iowa

Iowa City, Iowa, 52242

Recruiting
Vincent Liu · Contact
Vincent-liu@uiowa.edu

Hackensack University Medical Center

Hackensack, New Jersey, 07601

Recruiting
Tatyana Feldman, MD · Contact
feldman@hackensackUMC.org

University of Pittsburg

Pittsburgh, Pennsylvania, 15260

Recruiting
Oleg Akilov, MD · Contact
akilovoe@upmc.edu

University of Texas Southwestern

Dallas, Texas, 75390

Recruiting
Heather Wickless · Contact
Heather.Wickless@UTSouthwestern.edu

University of Utah Hospital

Salt Lake City, Utah, 84132

Recruiting
David Wada, MD · Contact
David.Wada@hsc.utah.edu

References

  • Scarisbrick JJ, Quaglino P, Whittaker S, Bagot M, Guenova E, Papadavid E, Prince HM, Sanches JA, Miyashiro DR, Servitje O, Querfeld C, Akilov O, Arumainathan A, Bennett L, Battistella M, Benstead K, Berti E, Beylot-Barry M, Busschots AM, Cowan R, Dummer R, Dunnill G, Estrach T, Evison F, Bashir A, Geskin L, Gru A, Guitart J, Herrera MC, Hodak E, Horwitz S, Jonak C, Klemke CD, Knobler R, Mckay P, Marschalko M, Massone C, Matin R, Mitteldorf C, Novoa R, Ortiz-Romero P, Pimpinelli N, Pujol RM, Ranki A, Vakeva L, Rieger KE, Stadler R, Trautinger F, Latzka J, Vermeer M, Wachsmuth R, Weatherhead S, Wehkamp U, Wobser M, Kim YH. A new prognostic index (CLIPI) for advanced cutaneous lymphoma enables precise patient risk stratification. Blood. 2025 Oct 2;146(14):1687-1692. doi: 10.1182/blood.2025029628.(PubMed)