Talk:The CERN Foundation
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Some proposed changes
 | This edit request by an editor with a conflict of interest was declined. Per: WP:CLOSEPARAPHRASE. |
Information to be added or removed:
Edit request |
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1. Change the purpose to: Improve care and outcomes for those with ependymoma. 2. Edit the page to: Established in 2006, the Collaborative Ependymoma Research Network (CERN) Foundation is a Nonprofit organization committed to improving the care and outcome of people with Ependymoma, a type of primary brain or spinal cord tumor that occurs in both children and adults, and improve the outcomes and care of patients, through community support and research efforts. [1] The organization is headquartered in Dayton, Ohio, USA. The CERN Foundation offers outreach programs and support efforts to the ependymoma community.
Provide educational resources, such as the Ependymoma Guide, and referral support to the patient and caregiver community.
Bridge the gap between the professional, patient and caregiver community by partnering with other organizations and neuro-oncologists to find better treatment options and guidance for those with ependymoma.
Engage the ependymoma community through research efforts, clinical studies, and awareness activities. History
For over a decade, the CERN Foundation has been at the forefront of the fight against ependymoma, a rare type of primary brain and spinal cord tumor. Taking a broad investigative approach involving scientists from some of the world’s most respected cancer centers, the work of the CERN Foundation has contributed to a vastly improved understanding of the genetic make-up and biology of ependymoma. Today, this knowledge is helping scientists around the world develop new therapies and improve the quality of life for those living with the disease. The concept for the CERN Foundation was sparked in 2006, when during the course of treating a patient facing a recurrence of ependymoma, Dr. Mark Gilbert recognized that there was relatively little in the medical literature on this type of tumor. Responding to the need for more information, Dr. Gilbert proposed the creation of an international group of researchers who would for the first time join together to take a collaborative approach to investigating the disease. [2] To help him in this effort, Dr. Gilbert reached out to a core group of colleagues, including Dr. Richard Gilbertson, a renowned expert in the research of childhood brain tumors, Dr. Kenneth Aldape, a leader in the pathology of adult brain tumors, Dr. Terri Armstrong, an expert in clinical care and patient outcomes, and Dr. Amar Gajjar, one of the United States most respected pediatric neuro-oncologists. Together, they assembled a team of laboratory-based and clinical researchers known for their collaborative mind set. [2] Research
Published Research
Fundraising
The CERN Foundation is a private foundation. The majority of funding comes from individuals and organizations who are dedicated to the CERN Foundation mission. Events
Ependymoma Awareness Day
The CERN Foundation established the first Ependymoma Awareness Day on April 19, 2012, with a butterfly release. The CERN Foundation supporters purchase butterflies for the release and proceeds help fund the organization. The Foundation hosts annual Ependymoma Awareness Days in the Spring each year in collaboration with other institutions and the National Brain Tumor Society. [3] References
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— Preceding unsigned comment added by Krodom (talk • contribs) 20:25, 18 September 2019 (UTC)
Reply 18-SEP-2019
Edit request declined
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Regards, Spintendo 05:50, 19 September 2019 (UTC)
Notes
- The insufficiently paraphrased text originates from pages 34 and 35 of the CERN Foundation's Ependymoma Guide (2nd Edition).
Need to update the page to reflect the current mission, history, research and overview.
Update side box to: Purpose: Improve care and outcomes for those with ependymoma.
Update page to: Not to be confused with CERN.
Established in 2006, the Collaborative Ependymoma Research Network (CERN) Foundation is a nonprofit organization committed to improving the care and outcome of people with ependymoma, a type of primary brain or spinal cord tumor that occurs in both children and adults, through community support and research efforts.[1] The organization is headquartered in Dayton, Ohio, USA.
The CERN Foundation offers outreach programs and support efforts to the ependymoma community.
- Educate
Provide educational resources, such as the Ependymoma Guide, and referral support to the patient and caregiver community.
- Collaborate
Bridge the gap between the professional, patient and caregiver community by partnering with other organizations and neuro-oncologists to find better treatment options and guidance for those with ependymoma.
- Participate
Engage the ependymoma community through research efforts, clinical studies, and awareness activities.
History
In November 2006, the concept of creating an international group to develop new treatments for ependymoma was proposed to Mark Gilbert, M.D., Deputy Chairman of Neuro-Oncology at MD Anderson Cancer Center, during a meeting with an ependymoma survivor.[1]
Shortly thereafter, Dr. Gilbert was joined by Richard Gilbertson, M.D., Ph.D. and Amar Gajjar, M.D. of St. Jude Children’s Research Hospital, and Ken Aldape, M.D. and Terri Armstrong, Ph.D. of the University of Texas MD Anderson Cancer Center. After the organization created its initial vision and established its leadership, additional partners joined the CERN team. For over a decade, the CERN Foundation has been at the forefront of the fight against ependymoma. On April 19, 2012 the CERN Foundation commemorated the first Ependymoma Awareness Day in Houston with a mass butterfly release.[2]
Mission
Committed to improving the care and outcome of people with ependymoma through community support and research efforts.[1]
References
Published Research
- YAP1 subgroup supratentorial ependymoma requires TEAD and nuclear factor I-mediated transcriptional programmes for tumorigenesis. Pajtler KW, Wei Y, Okonechnikov K, Silva PBG, Vouri M, Zhang L, Brabetz S, Sieber L, Gulley M, Mauermann M, Wedig T, Mack N, Kawasawa YI, Sharma T, Zuckermann M, Andreiuolo F, Holland E, Maass K, Körkel-Qu H, Liu H, Sahm F, Capper D, Bunt J, Richards LJ, Jones DTW, Korshunov A, Chavez L, Lichter P, Hoshino M, Pfister SM, Kool M, Li W, Kawauchi D. Nature Communications, September 2019.
- MYCN amplification drives an aggressive form of spinal ependymoma. Ghasemi DR, Sill M, Okonechnikov K, Korshunov A, Yip S, Schutz PW, Scheie D, Kruse A, Harter PN, Kastelan M, Wagner M, Hartmann C, Benzel J, Maass KK, Khasraw M, Sträter R, Thomas C, Paulus W, Kratz CP, Witt H, Kawauchi D, Herold-Mende C, Sahm F, Brandner S, Kool M, Jones DTW, von Deimling A, Pfister SM, Reuss DE, Pajtler KW. Acta Neuropathologica, August 2019.
- Objective Response and Clinical Benefit in Recurrent Ependymoma in Adults: Final Report of CERN 08-02: A Phase II Study of Dose-dense Temozolomide and Lapatinib. Armstrong T, Yuan Y, Wu J, Mendoza T, Vera E, Omuro A, Lieberman F, Robins H, Gerstner E, Wu J, Wen P, Mikkelsen T, Aldape K, Gilbert M. Neuro-Oncology, November 2018.
- Molecular heterogeneity and CXorf67 alterations in posterior fossa group A (PFA) ependymomas. Pajtler KW, Wen J, Sill M, Lin T, Orisme W, Tang B, Hübner J-M, Ramaswamy V, Jia S, Dalton JD, Haupfear K, Rogers HA, Punchihewa C, Lee R, Easton J, Wu G, Ritzmann TA, Chapman R, Chavez L, Boop FA, Klimo P, Sabin ND, Ogg R, Mack SC, Freibaum BD, Kim HJ, Witt H, Jones DTW, Vo B, Gajjar A, Pounds S Onar-Thomas A, Roussel MF, Zhang J, Taylor JP, Merchant TE, Grundy R, Tatevossian RG, Taylor MD, Pfister SM, Korshunov A, Kool M, Ellison DW, Acta Neuropathologica, August 2018.
- Clinical presentation and outcomes for adult ependymoma patients. Acquaye AA, Vera E, Gilbert MR, Armstrong TS. Cancer, September 2016.
- Therapeutic Impact of Cytoreductive Surgery and Irradiation of Posterior Fossa Ependymoma in the Molecular Era: A Retrospective Multicohort Analysis. Ramaswamy V, Hielscher T, Mack SC, Lassaletta A, Lin T, Pajtler KW, Jones DTW, Luu B, Cavalli FMG, Aldape K, Remke M, Mynarek M, Rutkowski S, Gururangan S, McLendon RE, Lipp ES, Dunham C, Hukin J, Eisenstat DD, Fulton D, van Landeghem FKH, Santi M, van Veelen M-LC, Van Meir EG, Osuka S, Fan X, Muraszko KM, Tirapelli DPC, Oba-Shinjo SM, Marie SKN, Carlotti CG, Ji YL, Rao AAN, Giannini C, Faria CC, Nunes S, Mora J, Hamilton RL, Hauser P, Jabado N, Petrecca K, Jung S, Massimi L, Zollo M, Cinalli G, Bognár L, Klekner A, Hortobágyi T, Leary S, Ermoian RP, Olson JM, Leonard JR, Gardner C, Grajkowska WA, Chambless LB, Cain J, Eberhart CG, Ahsan S, Massimino M, Giangaspero F, Buttarelli FR, Packer RJ, Emery L, Yong WH, Soto H, Liau LM, Everson R, Grossbach A, Shalaby T, Grotzer M, Karajannis MA, Zagzag D, Wheeler H, von Hoff K, Alonso MM, Tuñon T, Schüller U, Zitterbart K, Sterba J, Chan JA, Guzman M, Elbabaa SK, Colman H, Dhall G, Fisher PG, Fouladi M, Gajjar A, Goldman S, Hwang E, Kool M, Ladha H, Vera-Bolanos E, Wani K, Lieberman F, Mikkelsen T, Omuro AM, Pollack IF, Prados M, Robins HI, Soffietti R, Wu J, Metellus P, Tabori U, Bartels U, Bouffet E, Hawkins CH, Rutka JT, Dirks P, Pfister SM, TE, Gilbert MR, Armstrong TS, Korshunov A, Ellison DW, Taylor MD. Journal of Clinical Oncology, June 2016.
- Translational Pharmacokinetic‐Pharmacodynamic Modeling and Simulation: Optimizing 5‐Fluorouracil Dosing in Children With Pediatric Ependymoma. Daryani VM, Patel YT, Tagen M, Turner DC, Carcaboso AM, Atkinson JM, Gajjar A, Gilbertson RJ, Wright KD, Stewart CF. CPT: Pharmacometrics & Systems Pharmacology, April 2016.
- Biology and management of ependymomas. Wu J, Armstrong TS, Gilbert MR. Neuro-Oncology, July 2016.
- Phase I study of 5-fluorouracil in children and young adults with recurrent ependymoma. Wright KD, Daryani VM, Turner DC, Onar-Thomas A, Boulos N, Orr BA, Gilbertson RJ, Stewart CF, Gajjar A. Neuro-Oncology, December 2015.
- An open-label, two-stage, phase II study of bevacizumab and lapatinib in children with recurrent or refractory ependymoma: a collaborative ependymoma research network study (CERN). DeWire M, Fouladi M, Turner DC, Wetmore C, Hawkins C, Jacobs C, Yuan Y, Liu D, Goldman S, Fisher P, Rytting M, Bouffet E, Khakoo Y, Hwang EI, Foreman N, Stewart CF, Gilbert MR, Gilbertson R, Gajjar A. Journal of Neuro-Oncology, April 2015.
- Molecular Classification of Ependymal Tumors across All CNS Compartments, Histopathological Grades, and Age Groups. Pajtler, KW, Witt H, Sill M, Jones DTW, Hovestadt V, Kratochwil F, Wani K, Tatevossian R, Punchihewa C, Johann P, Reimand J, Warnatz H-J, Ryzhova M, Mack S, Ramaswamy V, Capper D, Schweizer L, Sieber L, Wittmann A, Huang Z, van Sluis P, Volckmann R, Koster J, Versteeg R, Fults D, Toledano H, Avigad S, Hoffman LM, Donson AM, Foreman N, Hewer E, Zitterbart K, Gilbert MR, Armstrong TS, Gupta N, Allen JC, Karajannis MA, Zagzag D, Hasselblatt M, Kulozik AE, Witt O, Collins VP, von Hoff K, Rutkowski S, Pietsch T, Bader G, Yaspo M-L, von Deimling A, Lichter P, Taylor MD, Gilbertson R, Ellison DW, Aldape K, Korshunov A, Kool M, Pfister SM. Cancer Cell, May 2015.
- An in vivo screen identifies ependymoma oncogenes and tumor-suppressor genes. Mohankumar KM, Currle DS, White E, Boulos N, Dapper J, Eden C, Nimmervoll B, Thiruvenkatam R, Connelly M, Kranenburg TA, Neale G, Olsen S, Wang Y-D, Finkelstein D, Wright K, Gupta K, Ellison DW, Thomas AO, Gilbertson RJ. Nature Genetics, June 2015.
- Symptoms and socio-economic impact of ependymoma on adult patients: results of the Adult Ependymoma Outcomes Project 2. Walbert T, Mendoza TR, Vera-Bolaños E, Acquaye A, Gilbert MR, Armstrong TS. Journal of Neuro-Oncology, October 2014.
- C11orf95–RELA fusions drive oncogenic NF-κB signalling in ependymoma. Parker M, Mohankumar KM, Punchihewa C, Weinlich R, Dalton JD, Li Y, Lee R, Tatevossian RG, Phoenix TN, Thiruvenkatam R, White E, Tang B, Orisme W, Gupta K, Rusch M, Chen X, Li Y, Nagahawhatte P, Hedlund E, Finkelstein D, Wu G, Shurtleff S, Easton J, Boggs K, Yergeau D, Vadodaria B, Mulder HL, Becksfort J, Gupta P, Huether R, Ma J, Song G, Gajjar A, Merchant T, Boop F, Smith AA, Ding L, Lu C, Ochoa K, Zhao D, Fulton RS, Fulton LL, Mardis ER, Wilson RK, Downing JR, Green DR, Zhang J, Ellison DW, Gilbertson RJ. Nature, February 2014.
- Clinical course and progression-free survival of adult intracranial and spinal ependymoma patients. Vera-Bolanos E, Aldape K, Yuan Y, Wu J, Wani K, Necesito-Reyes MJ, Colman H, Dhall G, Lieberman FS, Philippe Metellus, Tom Mikkelsen, Antonio Omuro, Sonia Partap, Michael Prados, H. Ian Robins, Soffietti R, Wu J, Gilbert MR, Armstrong TS on behalf of the CERN Foundation. Neuro-Oncology, August 2014.
- Supratentorial gross-totally resected non-anaplastic ependymoma: population based patterns of care and outcomes analysis. Ghia AJ, Mahajan A, Allen PK, Armstrong TS, Lang FF Jr, Gilbert MR, Brown PD. Journal of Neuro-Oncology, December 2013.
- Histological predictors of outcome in ependymoma are dependent on anatomic site within the central nervous system. Raghunathan A, Wani K, Armstrong TS, Vera-Bolanos E, Fouladi M, Gilbertson R, Gajjar A, Goldman S, Lehman NL, Metellus P, Mikkelsen T, Necesito-Reyes MJ, Omuro A, Packer RJ, Partap S, Pollack IF, Prados MD, Robins HI, Soffietti R, Wu J, Miller CR, Gilbert MR, Aldape KD, Collaborative Ependymoma Research Network. Brain Pathology, March 2013.
- Predictors of Survival among Pediatric and Adult Ependymoma Cases: A Study Using Surveillance, Epidemiology, and End Results Data from 1973 to 2007. Amirian ES, Armstrong TS, Aldape KD, Gilbert MR, Scheurer ME. Neuroepidemiology, July 2012.
- Current Treatment Options for Pediatric and Adult Patients With Ependymoma. Wright KD, Gaijjar A. Current Treatment Options in Oncology, July 2012.
- Prognostic gene expression signature in infratentorial ependymoma. Collaborative Ependymoma Research Network. Acta Neuropathologica, May 2012.
- An Integrated In Vitro and In Vivo High-Throughput Screen Identifies Treatment Leads for Ependymoma. Atkinson JM, Shelat AA, Carcaboso AM, Kranenburg TA, Arnold LA, Boulos N, Wright K, Johnson RA, Poppleton H, Mohankumar KM, Feau C, Phoenix T, Gibson P, Zhu L, Tong Y, Eden C, Ellison DW, Priebe W, Koul D, Yung WKA, Gajjar A, Stewart CF, Guy K, Gilbertson RJ. Cancer Cell, September 2011.
- Establishment and characterization of clinically relevant models of ependymoma: a true challenge for targeted therapy. Guan S, Shen R, Lafortune T, Tiao N, Houghton P, Yung WK, Koul D. Neuro-Oncology, July 2011.
- Clinical course of adult patients with ependymoma: results of the Adult Ependymoma Outcomes Project. Armstrong TS, Vera-Bolanos E, Gilbert MR. Cancer, November 2011.
- Symptom Profiles in Adult patients with Ependymoma: Report from the Ependymoma Outcomes Project. Acquaye A, Vera-Bolanos E, Armstrong TS, Nebiyou Bekele B, Gilbert MR.
- Cross-species genomics matches driver mutations and cell compartments to model ependymoma. Johnson RA, Wright K, Poppleton H, Mohankumar KM, Finkelstein D, Pounds SB, Rand V, Leary SES, White E, Eden C, Hogg T, Northcott P, Mack S, Neale G, Wang Y, Coyle B, Atkinson J, DeWire M, Kranenburg TA, Gillespie Y, Allen JC, Merchant T, Boop FA, Sanford RA, Gajjar A. Nature, July 2010.
- Adult ependymal tumors: prognosis and the M.D. Anderson Cancer Center experience. Armstrong TS; Vera-Bolanos E; Nebiyou Bekele B; Aldape K; Gilbert MR. Neuro-Oncology, August 2010.
- Ependymomas of the adult: molecular biology and treatment. Ruda R; Gilbert M; Soffietti R. Current Opinions in Neurology, December 2008.
Fundraising
The CERN Foundation is a private foundation. The majority of funding comes from individuals and organizations who are dedicated to the CERN Foundation mission.
Events
Ependymoma Awareness Day
The CERN Foundation established the first Ependymoma Awareness Day on April 19, 2012, with a butterfly release. The CERN Foundation supporters purchase butterflies for the release and proceeds help fund the organization. The Foundation hosts annual Ependymoma Awareness Days in the Spring each year in collaboration with other institutions and the National Brain Tumor Society. [1]
References
External links
Would it be appropriate to link the published research articles listed here?
The proposed edit above does so, but the current page does not. Is linking directly to articles like this generally considered bad practice, or has it just not been done here? RedKnight7146 (talk) 03:10, 24 February 2024 (UTC)