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Item The present and future opportunities of the Rare Cancer Network: an international consortium for advancement of oncologic care(SAGE PUBLICATIONS LTD, 2015-01-01) Sio, Terence T.; Mirimanoff, Rene-Olivier; Ozyar, Enis; Belkacemi, Yazid; Miller, Robert C.; Villa, Salvador; Thariat, Juliette; Krengli, Marco; Scandolaro, Luciano; Atalar, Banu; Ugurluer, Gamze; Gutierrez Garcia, Beatriz; Ashman, Jonathan B.; Anacak, Yavuz; Onal, Cem; Arat, Mutlu; Sun, Xu Shan; Tesanovic, Dusanka; Lassen-Ramshad, Yasmin; Oksuz, Didem; Dincbas, Fazilet; Sezen, Duygu; Akyurek, Serap; Kutuk, Tugce; Bolukbasi, Yasemin; Eren, Gulnihan; Paryani, Nitesh N.; Ahmed, Safia K.; Moretti, Luigi; Merrell, Kenneth W.; Chang, Kenneth; Mayeda, Mark; Arnett, Andrea L.; Habboush, Jacob Y.; Ozsahin, Mahmut; Network, Rare CancTo date, the Rare Cancer Network (RCN) has initiated more than 90 studies and 54 peer-reviewed publications were produced as a result. The Second International Symposium of the Rare Cancer Network recently took place in Istanbul, Turkey on April 17-18, 2015, and update was given on multiple currently ongoing projects, while also giving room for new proposals which will shape the direction of future studies for the group. This companion issue of the RCN Proceedings summarized the findings of this meeting, while also serving as a call for fresh projects and papers which will continue to energize the group and advance the oncologic science. A brief introduction to the principles, history, and vision of the RCN was also included. To review, the academic year of 2014-15 marked an enormous success for the international members of the RCN, with the generation of 8 fully published papers and more than 12 newly proposed topics. By the collective efforts of all RCN members, in the future, we look forward to the upcoming opportunities in continuing to advance the standard of chemo-and radiotherapeutic oncologic care for selected rare tumor topics. The studies of these rare cancers often do not allow the design and execution of prospectively enrolled trialsItem Primary hepatic lymphoma: a retrospective, multicenter Rare Cancer Network study(PAGEPRESS PUBL, 2016-01-01) Ugurluer, Gamze; Miller, Robert C.; Li, Yexiong; Thariat, Juliette; Ghadjar, Pirus; Schick, Ulrike; Ozsahin, MahmutPrimary hepatic lymphoma (PHL) is a rare malignancy. We aimed to assess the clinical profile. outcome and prognostic factors in PHL through the Rare Cancer Network (RCN). A retrospective analysis of 41 patients was performed. Median age was 62 years (range. 2386 years) with a male-to-female ratio of 1.9:1.0. Abdominal pain or discomfort was the most common presenting symptom. Regarding B-symptoms, 19.5\% of patients had fever, 17.1\% weight loss, and 9.8\% night sweats. The most common radiological presentation was multiple lesions. Liver function tests were elevated in 56.1\% of patients. The most common histopathological diagnosis was diffuse large B-cell lymphoma (65.9\%). Most of the patients received Chop-like (cyclophosphamide. doxorubicin, vincristine, and prednisone) regimens, 4 patients received radiotherapy (dose range, 30.6-40.0 Gy). Median survival was 163 months, and 5- and 10-year overall survival rates were 77 and 59\%, respectively. The 5- and 10-year disease-free and lymphoma-specific survival rates were 69, 56, 87 and 70\%, respectively. Multivariate analysis revealed that fever. weight loss, and normal hemoglobin level were the independent factors influencing the outcome. In this retrospective multicenter RCN study, patients with PHL had a relatively better prognosis than that reported elsewhere. Multicenter prospective studies are still warranted to establish treatment guidelines, outcome and prognostic factors.Item History of the Rare Cancer Network and past research(PAGEPRESS PUBL, 2014-01-01) Mirimanoff, Rene-Olivier; Ozsahin, Mahmut; Thariat, Juliette; Ozyar, Enis; Schick, Ulrike; Pehlivan, Berrin; Krengli, Marco; Pellanda, Alessandra Franzetti; Vees, Hansjoerg; Cai, Ling; Scandolaro, Luciano; Belkacemi, Yazid; Villa, Salvador; Igdem, Sefik; Lutsyk, Myroslav; Miller, Robert C.Approximately, twenty years ago, the Rare Cancer Network (RCN) was formed in Lausanne, Switzerland, to support the study of rare malignancies. The RCN has grown over the years and now includes 130 investigators from twenty-four nations on six continents. The network held its first international symposium in Nice, France, on March 21-22, 2014. The proceedings of that meeting are presented and contains the abstracts of fourteen oral presentations made at the meeting of prior RCN studies. From 1993 to 2014, 74 RCN studies have been initiated, of which 54 were completed, 10 are in progress or under analysis, and 9 were stopped due to poor accrual. Forty-four peer reviewed publications have been written on behalf of the RCN.Item Primary extranodal lymphoma of the glands. Literature review and options for best practice in 2019(ELSEVIER SCIENCE INC, 2019-01-01) Belkacemi, Yazid; Sio, Terence T.; Colson-Durand, Laurianne; Onal, Cem; Villa, Salvador; Anacak, Yavuz; Krengli, Marco; Thariat, Juliette; Ugurluer, Gamze; Miller, Robert C.; Mirimanoff, Rene-Olivier; Ozsahin, Mahmut; To, Nhu HanhPrimary extranodal non-Hodgkin's lymphomas (EN-NHL) are a heterogeneous group of malignancies that involve numerous entities with significant difference in terms of tumor site locations, prognostic factors, biology expression, and therapeutic options. In the literature, many EN-NHL types were reported from limited series which only allowed narrow views for elucidating prognostic factors and defining the role of loco-regional therapies in the era of new systemic and biologically targeted therapies. The Rare Cancer Network (RCN), an international multidisciplinary consortium, has published a number of reports on several EN-NHL sites which included many gland locations. In this review, we will focus on the recent literature for a selected number of EN-NHL types in both exocrine and endocrine gland locations. We aim to provide renewed and clear messages for the best practice in 2019 for diagnosis, histopathology, treatments, and also their prognostic implications. We believe that better understanding of molecular and genetic characteristics of these particular diseases is crucial for an appropriate management in the era of personalized treatment developments.Item The Rare Cancer Network: ongoing studies and future strategy(SAGE PUBLICATIONS LTD, 2014-01-01) Ozsahin, Mahmut; Mirimanoff, Rene-Olivier; Thariat, Juliette; Sun, Xu Shan; Atalar, Banu; Lassen-Ramshad, Yasmin; Ugurluer, Gamze; Krishnan, Sunil; Hallemeier, Christopher; Van Houtte, Paul; Krengli, Marco; Zhang, Lan Jun; Chang, Kenneth; Funk, Ryan; Rooney, Jessica; Miller, Robert C.The Rare Cancer Network (RCN) was formed in the early 1990's to create a global network that could pool knowledge and resources in the studies of rare malignancies whose infrequency prevented both their study with prospective clinical trials. To date, the RCN has initiated 74 studies resulting in 46 peer reviewed publications. The First International Symposium of the Rare Cancer Network took place in Nice in March of 2014. Status updates and proposals for new studies were heard for fifteen topics. Ongoing studies continue for cardiac sarcomas, thyroid cancers, glomus tumors, and adult medulloblastomas. New proposals were presented at the symposium for primary hepatic lymphoma, solitary fibrous tumors, Rosai-Dorfman disease, tumors of the ampulla of Vater, salivary gland tumors, anorectal melanoma, midline nuclear protein in testes carcinoma, pulmonary lymphoepithelioma-like carcinoma, adenoid cystic carcinoma of the trachea, osteosarcomas of the mandible, and extra-cranial hemangiopericytoma. This manuscript presents the abstracts of those proposals and updates on ongoing studies, as well a brief summary of the vision and future of the RCN.Item Access to Radiation Therapy by Syrian Refugees Displaced to Turkey(ELSEVIER INC, 2022-01-01) Dagoglu, Nergiz; Karaman, Sule; Atalar, Banu; Miller, Robert C.; Oral, Ethem N.For over 10 years, the Syrian conflict has caused millions of people to leave their homeland, causing one of the biggest refugee crises in modern history. Considering its prevalence, cancer is an important care burden among Syrian refugees. Radiation therapy is one of the essential parts of cancer treatment, and radiation oncology departments must guarantee optimal cancer treatments even in such a challenging setting when patients are displaced forcefully from their homes. National and institutional measures are highlighted in this manuscript to provide suggestions for the delivery of care during refugee crises. There are two issues creating barriers to serving refugee populations: the loss of access to their original care records in Syria for those with a previous diagnosis of cancer referred for continuation of radiation therapy or reirradiation, and the effect of acute radiation therapy toxicity on treatment compliance. (c) 2022 The Authors. Published by Elsevier Inc. on behalf of American Society for Radiation Oncology. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).