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1. Clinical and biological landscape of constitutional mismatch-repair deficiency syndrome: an International Replication Repair Deficiency Consortium cohort study

Author

Ercan, Ayse Bahar, Aronson, Melyssa, Fernandez, Nicholas R, Chang, Yuan, Levine, Adrian, Liu, Zhihui Amy, Negm, Logine, Edwards, Melissa, Bianchi, Vanessa, Stengs, Lucie, Chung, Jiil, Al-Battashi, Abeer, Reschke, Agnes, Lion, Alex, Ahmad, Alia, Lassaletta, Alvaro, Reddy, Alyssa T, Al-Darraji, Amir F, Shah, Amish C, Van Damme, An, Bendel, Anne, Rashid, Aqeela, Margol, Ashley S, Kelly, Bethany L, Pencheva, Bojana, Heald, Brandie, Lemieux-Anglin, Brianna, Crooks, Bruce, Koschmann, Carl, Gilpin, Catherine, Porter, Christopher C, Gass, David, Samuel, David, Ziegler, David S, Blumenthal, Deborah T, Kuo, Dennis John, Hamideh, Dima, Basel, Donald, Khuong-Quang, Dong-Anh, Stearns, Duncan, Opocher, Enrico, Carceller, Fernando, Baris Feldman, Hagit, Toledano, Helen, Winer, Ira, Scheers, Isabelle, Fedorakova, Ivana, Su, Jack M, Vengoechea, Jaime, Sterba, Jaroslav, Knipstein, Jeffrey, Hansford, Jordan R, Gonzales-Santos, Julieta Rita, Bhatia, Kanika, Bielamowicz, Kevin J, Minhas, Khurram, Nichols, Kim E, Cole, Kristina A, Penney, Lynette, Hjort, Magnus Aasved, Sabel, Magnus, Gil-da-Costa, Maria Joao, Murray, Matthew J, Miller, Matthew, Blundell, Maude L, Massimino, Maura, Al-Hussaini, Maysa, Al-Jadiry, Mazin F, Comito, Melanie A, Osborn, Michael, Link, Michael P, Zapotocky, Michal, Ghalibafian, Mithra, Shaheen, Najma, Mushtaq, Naureen, Waespe, Nicolas, Hijiya, Nobuko, Fuentes-Bolanos, Noemi, Ahmad, Olfat, Chamdine, Omar, Roy, Paromita, Pichurin, Pavel N, Nyman, Per, Pearlman, Rachel, Auer, Rebecca C, Sukumaran, Reghu K, Kebudi, Rejin, Dvir, Rina, Raphael, Robert, Elhasid, Ronit, McGee, Rose B, Chami, Rose, Noss, Ryan, Tanaka, Ryuma, Raskin, Salmo, Sen, Santanu, Lindhorst, Scott, Perreault, Sebastien, Caspi, Shani, Riaz, Shazia, Constantini, Shlomi, Albert, Sophie, Chaleff, Stanley, Bielack, Stefan, Chiaravalli, Stefano, Cramer, Stuart Louis, Roy, Sumita, Cahn, Suzanne, Penna, Suzanne, Hamid, Syed Ahmer, Ghafoor, Tariq, Imam, Uzma, Larouche, Valerie, Magimairajan Issai, Vanan, Foulkes, William D, Lee, Yi Yen, Nathan, Paul C, Maruvka, Yosef E, Greer, Mary-Louise C, Durno, Carol, Shlien, Adam, Ertl-Wagner, Birgit, Villani, Anita, Malkin, David, Hawkins, Cynthia, Bouffet, Eric, Das, Anirban, and Tabori, Uri

Published
2024
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2. Survival in primary hemophagocytic lymphohistiocytosis, 2016 to 2021: etoposide is better than its reputation

Author

Böhm, Svea, Wustrau, Katharina, Pachlopnik Schmid, Jana, Prader, Seraina, Ahlmann, Martina, Yacobovich, Joanne, Beier, Rita, Speckmann, Carsten, Behnisch, Wolfgang, Ifversen, Marianne, Jordan, Michael, Marsh, Rebecca, Naumann-Bartsch, Nora, Mauz-Körholz, Christine, Hönig, Manfred, Schulz, Ansgar, Malinowska, Iwona, Hines, Melissa, Nichols, Kim E., Gil-Herrera, Juana, Talano, Julie-An, Crooks, Bruce, Formankova, Renata, Jorch, Norbert, Bakhtiar, Shahrzad, Kühnle, Ingrid, Streiter, Monika, Nathrath, Michaela, Russo, Alexandra, Dürken, Matthias, Lang, Peter, Lindemans, Caroline, Henter, Jan-Inge, Lehmberg, Kai, and Ehl, Stephan

Published
2024
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3. Survival Benefit for Individuals With Constitutional Mismatch Repair Deficiency Undergoing Surveillance

Author

Durno, Carol, Ercan, Ayse Bahar, Bianchi, Vanessa, Edwards, Melissa, Aronson, Melyssa, Galati, Melissa, Atenafu, Eshetu G, Abebe-Campino, Gadi, Al-Battashi, Abeer, Alharbi, Musa, Azad, Vahid Fallah, Baris, Hagit N, Basel, Donald, Bedgood, Raymond, Bendel, Anne, Ben-Shachar, Shay, Blumenthal, Deborah T, Blundell, Maude, Bornhorst, Miriam, Bronsema, Annika, Cairney, Elizabeth, Rhode, Sara, Caspi, Shani, Chamdin, Aghiad, Chiaravalli, Stefano, Constantini, Shlomi, Crooks, Bruce, Das, Anirban, Dvir, Rina, Farah, Roula, Foulkes, William D, Frenkel, Zehavit, Gallinger, Bailey, Gardner, Sharon, Gass, David, Ghalibafian, Mithra, Gilpin, Catherine, Goldberg, Yael, Goudie, Catherine, Hamid, Syed Ahmer, Hampel, Heather, Hansford, Jordan R, Harlos, Craig, Hijiya, Nobuko, Hsu, Saunders, Kamihara, Junne, Kebudi, Rejin, Knipstein, Jeffrey, Koschmann, Carl, Kratz, Christian, Larouche, Valerie, Lassaletta, Alvaro, Lindhorst, Scott, Ling, Simon C, Link, Michael P, De Mola, Rebecca Loret, Luiten, Rebecca, Lurye, Michal, Maciaszek, Jamie L, MagimairajanIssai, Vanan, Maher, Ossama M, Massimino, Maura, McGee, Rose B, Mushtaq, Naureen, Mason, Gary, Newmark, Monica, Nicholas, Garth, Nichols, Kim E, Nicolaides, Theodore, Opocher, Enrico, Osborn, Michael, Oshrine, Benjamin, Pearlman, Rachel, Pettee, Daniel, Rapp, Jan, Rashid, Mohsin, Reddy, Alyssa, Reichman, Lara, Remke, Marc, Robbins, Gabriel, Roy, Sumita, Sabel, Magnus, Samuel, David, Scheers, Isabelle, Schneider, Kami Wolfe, Sen, Santanu, Stearns, Duncan, Sumerauer, David, Swallow, Carol, Taylor, Leslie, Thomas, Gregory, Toledano, Helen, Tomboc, Patrick, Van Damme, An, Winer, Ira, Yalon, Michal, Yen, Lee Yi, Zapotocky, Michal, Zelcer, Shayna, and Ziegler, David S

Subjects
Cancer, Brain Disorders, Clinical Research, Digestive Diseases, Prevention, Brain Cancer, Rare Diseases, Adolescent, Adult, Brain Neoplasms, Child, Child, Preschool, Colorectal Neoplasms, DNA Mismatch Repair, DNA Repair Enzymes, Early Detection of Cancer, Female, Follow-Up Studies, Humans, Male, Neoplastic Syndromes, Hereditary, Population Surveillance, Prognosis, Prospective Studies, Survival Rate, United States, Young Adult, Clinical Sciences, Oncology and Carcinogenesis, Oncology & Carcinogenesis
Abstract

PurposeConstitutional mismatch repair deficiency syndrome (CMMRD) is a lethal cancer predisposition syndrome characterized by early-onset synchronous and metachronous multiorgan tumors. We designed a surveillance protocol for early tumor detection in these individuals.Patients and methodsData were collected from patients with confirmed CMMRD who were registered in the International Replication Repair Deficiency Consortium. Tumor spectrum, efficacy of the surveillance protocol, and malignant transformation of low-grade lesions were examined for the entire cohort. Survival outcomes were analyzed for patients followed prospectively from the time of surveillance implementation.ResultsA total of 193 malignant tumors in 110 patients were identified. Median age of first cancer diagnosis was 9.2 years (range: 1.7-39.5 years). For patients undergoing surveillance, all GI and other solid tumors, and 75% of brain cancers were detected asymptomatically. By contrast, only 16% of hematologic malignancies were detected asymptomatically (P < .001). Eighty-nine patients were followed prospectively and used for survival analysis. Five-year overall survival (OS) was 90% (95% CI, 78.6 to 100) and 50% (95% CI, 39.2 to 63.7) when cancer was detected asymptomatically and symptomatically, respectively (P = .001). Patient outcome measured by adherence to the surveillance protocol revealed 4-year OS of 79% (95% CI, 54.8 to 90.9) for patients undergoing full surveillance, 55% (95% CI, 28.5 to 74.5) for partial surveillance, and 15% (95% CI, 5.2 to 28.8) for those not under surveillance (P < .0001). Of the 64 low-grade tumors detected, the cumulative likelihood of transformation from low-to high-grade was 81% for GI cancers within 8 years and 100% for gliomas in 6 years.ConclusionSurveillance and early cancer detection are associated with improved OS for individuals with CMMRD.

Published
2021

4. Canadian Consensus for Treatment of BRAF V600E Mutated Pediatric and AYA Gliomas.

Author

Erker, Craig, Vanan, Magimairajan Issai, Larouche, Valérie, Nobre, Liana, Cacciotti, Chantel, Vairy, Stéphanie, Zelcer, Shayna, Fleming, Adam, Bouffet, Eric, Jabado, Nada, Legault, Geneviève, Renzi, Samuele, McKeown, Tara, Crooks, Bruce, Thacker, Nirav, Ramaswamy, Vijay, Coltin, Hallie, Lafay-Cousin, Lucie, Cheng, Sylvia, and Hukin, Juliette

Subjects
BRAF genes, GLIOMAS, TERMINATION of treatment, YOUNG adults, TREATMENT duration
Abstract

Background: The treatment of BRAF V600E gliomas with BRAF inhibitors (BRAFis) and MEK inhibitors (MEKis) has been increasingly integrated into clinical practice for pediatric low-grade gliomas (PLGGs) and pediatric high-grade gliomas (HGGs). However, some questions remain unanswered, such as the best time to start targeted therapy, duration of treatment, and discontinuation of therapy. Given that no clinical trial has been able to address these critical questions, we developed a Canadian Consensus statement for the treatment of BRAF V600E mutated pediatric as well as adolescent and young adult (AYA) gliomas. Methods: Canadian neuro-oncologists were invited to participate in the development of this consensus. The consensus was discussed during monthly web-based national meetings, and the algorithms were revised until a consensus was achieved. Results: A total of 26 participants were involved in the development of the algorithms. Two treatment algorithms are proposed, one for the initiation of treatment and one for the discontinuation of treatment. We suggest that most patients with BRAF V600E gliomas should be treated with BRAFis ± MEKis upfront. Discontinuation of treatment can be considered in certain circumstances, and we suggest a slow wean. Conclusions: Based on expert consensus in Canada, we developed algorithms for treatment initiation of children and AYA with BRAF V600E gliomas as well as a discontinuation algorithm. [ABSTRACT FROM AUTHOR]

Published
2024
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6. Ameliorer la reglementation du cannabis medical au Canada pour mieux servir les patients pediatriques

Author

Huntsman, Richard J., Kelly, Lauren E., Alcorn, Jane, Appendino, Juan Pablo, Belanger, Richard E., Crooks, Bruce, Finkelstein, Yaron, Gilpin, Andrea, Lewis, Evan, Litalien, Catherine, Jacobs, Julia, Moore-Hepburn, Charlotte, Oberlander, Timothy, Rassekh, S. Rod, Repetski, Alexander E., Rieder, Michael J., Shackelford, Alan, Siden, Hal, Szafron, Michael, and t'Jong, Geert W.

Subjects
Medical marijuana, Health
Abstract

Les enfants atteints de maladies chroniques invalidantes et douloureuses utilisent de plus en plus le cannabis medical, particulierement lorsque les options therapeutiques classiques sont peu efficaces ou provoquent des effets [...]

Published
2021
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7. Improving the regulation of medical cannabis in Canada to better serve pediatric patients

Author

Huntsman, Richard J., Kelly, Lauren E., Alcorn, Jane, Appendino, Juan Pablo, Belanger, Richard E., Crooks, Bruce, Finkelstein, Yaron, Gilpin, Andrea, Lewis, Evan, Litalien, Catherine, Jacobs, Julia, Moore-Hepburn, Charlotte, Oberlander, Timothy, Rassekh, S. Rod, Repetski, Alexander E., Rieder, Michael J., Shackelford, Alan, Siden, Hal, Szafron, Michael, Jong, Geert W. 't, and Vaillancourt, Regis

Subjects
Children -- Diseases, Medical marijuana -- Laws, regulations and rules -- Usage, Legalization of narcotics -- Laws, regulations and rules, Chronic diseases -- Drug therapy, Health care industry -- Laws, regulations and rules, Health care industry, Government regulation, Health
Abstract

Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware [...]

Published
2021
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8. Survival in primary hemophagocytic lymphohistiocytosis 2016-2021: etoposide is better than its reputation

Author

Böhm, Svea, primary, Wustrau, Katharina, additional, Pachlopnik Schmid, Jana, additional, Prader, Seraina, additional, Ahlman, Martina, additional, Yacobovich, Joanne, additional, Beier, Rita, additional, Speckmann, Carsten, additional, Behnisch, Wolfgang, additional, Ifversen, Marianne, additional, Jordan, Michael B., additional, Marsh, Rebecca A, additional, Naumann-Bartsch, Nora, additional, Mauz-Koerholz, Christine, additional, Honig, Manfred, additional, Schulz, Ansgar S, additional, Malinowska, Iwona, additional, Hines, Melissa Ruth, additional, Nichols, Kim E, additional, Gil-Herrera, Juana, additional, Talano, Julie-An, additional, Crooks, Bruce, additional, Formankova, Renata, additional, Jorch, Norbert, additional, Bakhtiar, Shahrzad, additional, Kühnle, Ingrid, additional, Streiter, Monika, additional, Nathrath, Michaela, additional, Russo, Alexandra, additional, Duerken, Matthias, additional, Lang, Peter, additional, Lindemans, Caroline A., additional, Henter, Jan-Inge, additional, Lehmberg, Kai, additional, and Ehl, Stephan, additional

Published
2023
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9. Germline-driven replication repair-deficient high-grade gliomas exhibit unique hypomethylation patterns

Author

Dodgshun, Andrew J., Fukuoka, Kohei, Edwards, Melissa, Bianchi, Vanessa J., Das, Anirban, Sexton-Oates, Alexandra, Larouche, Valérie, Vanan, Magimairajan I., Lindhorst, Scott, Yalon, Michal, Mason, Gary, Crooks, Bruce, Constantini, Shlomi, Massimino, Maura, Chiaravalli, Stefano, Ramdas, Jagadeesh, Mason, Warren, Ashraf, Shamvil, Farah, Roula, Van Damme, An, Opocher, Enrico, Hamid, Syed Ahmer, Ziegler, David S., Samuel, David, Cole, Kristina A., Tomboc, Patrick, Stearns, Duncan, Thomas, Gregory A., Lossos, Alexander, Sullivan, Michael, Hansford, Jordan R., Mackay, Alan, Jones, Chris, Jones, David T. W., Ramaswamy, Vijay, Hawkins, Cynthia, Bouffet, Eric, and Tabori, Uri

Published
2020
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10. Pontine gliomas a 10-year population-based study: a report from The Canadian Paediatric Brain Tumour Consortium (CPBTC)

Author

Fonseca, Adriana, Afzal, Samina, Bowes, Lynette, Crooks, Bruce, Larouche, Valerie, Jabado, Nada, Perreault, Sebastien, Johnston, Donna L., Zelcer, Shayna, Fleming, Adam, Scheinemann, Katrin, Silva, Mariana, Vanan, Magimairajan Issai, Mpofu, Chris, Wilson, Beverly, Eisenstat, David D., Lafay-Cousin, Lucie, Hukin, Juliette, Hawkins, Cynthia, Bartels, Ute, and Bouffet, Eric

Published
2020
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11. Removing barriers to accessing medical cannabis for paediatric patients.

Author

Huntsman, Richard J, Elliott, Jesse, Lewis, Evan, Moore-Hepburn, Charlotte, Alcorn, Jane, Mansell, Holly, Appendino, Juan P, Bélanger, Richard E, Corley, Scott, Crooks, Bruce, Denny, AnneMarie M, Finkelstein, Yaron, Finley, Allen, Fung, Ryan, Gilpin, Andrea, Litalien, Catherine, Jacobs, Julia, Oberlander, Timothy F, Palm, Ashley, and Palm, Jacob

Subjects
HEALTH services accessibility, INVENTORY shortages, PEDIATRICS, MEDICAL care costs, MEDICAL marijuana, DRUG prescribing, DRUGS, PHYSICIAN practice patterns, PHARMACEUTICAL industry, THERAPEUTICS, CHILDREN
Abstract

Medical cannabis (MC) may offer therapeutic benefits for children with complex neurological conditions and chronic diseases. In Canada, parents, and caregivers frequently report encountering barriers when accessing MC for their children. These include negative preconceived notions about risks and benefits, challenges connecting with a knowledgeable healthcare provider (HCP), the high cost of MC products, and navigating MC product shortages. In this manuscript, we explore several of these barriers and provide recommendations to decision-makers to enable a family-centered and evidence-based approach to MC medicine and research for children. [ABSTRACT FROM AUTHOR]

Published
2024
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13. The Clinical and Biological Landscape of Constitutional Mismatch Repair Deficiency: An IRRDC Study

Author

Ercan, Ayse Bahar, primary, Aronson, Melyssa, additional, Fernandez, Nicholas R., additional, Chang, Yuan, additional, Levine, Adrian, additional, Liu, Amy Zhihui, additional, Negm, Logine, additional, Edwards, Melissa, additional, Bianchi, Vanessa, additional, Stengs, Lucie, additional, Chung, Brian, additional, Al-Battashi, Abeer, additional, Reschke, Agnes, additional, Lion, Alex, additional, Ahmad, Alia, additional, Lassaletta, Alvaro, additional, Reddy, Alyssa, additional, Al-Darraji, Amir Fadhil, additional, Shah, Amish C., additional, Van Damme, An, additional, Bendel, Anne E., additional, Rashid, Aqeela, additional, Margol, Ashley S., additional, Kelly, Bethany L., additional, Pencheva, Bojana, additional, Heald, Brandie, additional, Anglin, Brianna Lemieux, additional, Crooks, Bruce, additional, Koschmann, Carl, additional, Gilpin, Catherine, additional, Porter, Christopher C., additional, Gass, David, additional, Samuel, David, additional, Ziegler, David S., additional, Blumenthal, Deborah T., additional, Kuo, Dennis John, additional, Hamideh, Dima, additional, Basel, Donald, additional, Khuong Quang, Dong Anh, additional, Stearns, Duncan, additional, Opocher, Enrico, additional, Carcellar, Fernando, additional, Feldman, Hagit Baris, additional, Toledano, Helen, additional, Winer, Ira S., additional, Scheers, Isabelle, additional, Fedorakova, Ivana, additional, Su, Jack M., additional, Barrios, Jaime Vengoechea, additional, Sterba, Jaroslav, additional, Knipstein, Jeffrey, additional, Hansford, Jordan R., additional, Gonzales-Santos, Julieta Rita, additional, Bhatia, Kanika, additional, Bielamowicz, Kevin J., additional, Minhas, Khurram, additional, Nichols, Kim E., additional, Cole, Kristina A., additional, Penney, Lynette, additional, Hjort, Magnus Aasved, additional, Sabel, Magnus, additional, Gil-da-Costa, Maria Joao, additional, Murray, Matthew J., additional, Miller, Matthew, additional, Blundell, Maude, additional, Massimino, Maura, additional, Al-Hussaini, Maysa, additional, Al-Jadiry, Mazin Faisal, additional, Comito, Melanie A., additional, Osborn, Michael, additional, Link, Michael P., additional, Zapotocky, Michal, additional, Ghalibafian, Mithra, additional, Shaheen, Najma, additional, Mushtaq, Naureen, additional, Waespe, Nicolas, additional, Hijiya, Nobuko, additional, Fuentes Bolanos, Noemi, additional, Ahmad, Olfat, additional, Chamdine, Omar, additional, Roy, Paromita, additional, Pichurin, Pavel N., additional, Nymen, Per, additional, Pearlman, Rachel, additional, Auer, Rebecca C., additional, Sukumaran, Reghu K., additional, Kebudi, Rejin, additional, Dvir, Rina, additional, Raphael, Robert, additional, Elhasid, Ronit, additional, McGee, Rose B., additional, Chami, Rose, additional, Noss, Ryan, additional, Tanaka, Ryuma, additional, Raskin, Salmo, additional, Sen, Santanu, additional, Lindhorst, Scott, additional, Perreault, Sebastian, additional, Caspi, Shani, additional, Riaz, Shazia, additional, Constantini, Shlomi, additional, Albert, Sophie, additional, Chaleff, Stanley, additional, Bielack, Stefan S., additional, Chiaravalli, Stefano, additional, Cramer, Stuart Louis, additional, Roy, Sumita, additional, Cahn, Suzanne, additional, Penna, Suzanne, additional, Hamid, Syed Ahmer, additional, Ghafoor, Tariq, additional, Imam, Uzma, additional, Larouche, Valerie, additional, MagimairajanIssai, Vanan, additional, Foulkes, William, additional, Lee, Yi Yen, additional, Maruvka, Yosef E., additional, Greer, Mary-Louise C., additional, Durno, Carol, additional, Shlien, Adam, additional, Ertl-Wagner, Birgit, additional, Villani, Anita, additional, Malkin, David, additional, Hawkins, Cynthia, additional, Bouffet, Eric, additional, Das, Anirban, additional, and Tabori, Uri, additional

Published
2023
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14. Outcomes of Infants and Young Children With Relapsed Medulloblastoma After Initial Craniospinal Irradiation–Sparing Approaches: An International Cohort Study

Author

Erker, Craig, primary, Mynarek, Martin, additional, Bailey, Simon, additional, Mazewski, Claire M., additional, Baroni, Lorena, additional, Massimino, Maura, additional, Hukin, Juliette, additional, Aguilera, Dolly, additional, Cappellano, Andrea M., additional, Ramaswamy, Vijay, additional, Lassaletta, Alvaro, additional, Perreault, Sébastien, additional, Kline, Cassie N., additional, Rajagopal, Revathi, additional, Michaiel, George, additional, Zapotocky, Michal, additional, Santa-Maria Lopez, Vicente, additional, La Madrid, Andres Morales, additional, Cacciotti, Chantel, additional, Sandler, Eric S., additional, Hoffman, Lindsey M., additional, Klawinski, Darren, additional, Khan, Sara, additional, Salloum, Ralph, additional, Hoppmann, Anna L., additional, Larouche, Valérie, additional, Dorris, Kathleen, additional, Toledano, Helen, additional, Gilheeney, Stephen W., additional, Abdelbaki, Mohamed S., additional, Wilson, Beverly, additional, Tsang, Derek S., additional, Knipstein, Jeffrey, additional, Oren, Michal Yalon, additional, Shah, Shafqat, additional, Murray, Jeffrey C., additional, Ginn, Kevin F., additional, Wang, Zhihong J., additional, Fleischhack, Gudrun, additional, Obrecht, Denise, additional, Tonn, Svenja, additional, Harrod, Virginia L., additional, Matheson, Kara, additional, Crooks, Bruce, additional, Strother, Douglas R., additional, Cohen, Kenneth J., additional, Hansford, Jordan R., additional, Mueller, Sabine, additional, Margol, Ashley, additional, Gajjar, Amar, additional, Dhall, Girish, additional, Finlay, Jonathan L., additional, Northcott, Paul A., additional, Rutkowski, Stefan, additional, Clifford, Steven C., additional, Robinson, Giles, additional, Bouffet, Eric, additional, and Lafay-Cousin, Lucie, additional

Published
2022
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17. Outcomes of patients with bilateral retinoblastoma: A report from the RIVERBOAT Consortium.

Author

Friedman, Debra L., primary, Schremp, Emma, additional, Koyama, Tatsuki, additional, Sun, Lili, additional, Kehler, Lori Ann, additional, Daniels, Anthony, additional, Hayashi, Robert J., additional, Shah, Amish C., additional, Dimaras, Helen, additional, Nagarajan, Rajaram, additional, Schmidt, Mary Lou, additional, Chintagumpala, Murali M., additional, Herzog, Cynthia E., additional, Luna-Fineman, Sandra, additional, Fraley, Claire Elyse, additional, Weinstein, Joanna, additional, Olson, Thomas Arthur, additional, Crooks, Bruce, additional, Schwartz, Cindy L., additional, and Neglia, Joseph Philip, additional

Published
2022
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18. Outcomes of patients with unilateral retinoblastoma: A report from the RIVERBOAT Consortium.

Author

Friedman, Debra L., primary, Schremp, Emma, additional, Koyama, Tatsuki, additional, Sun, Lili, additional, Kehler, Lori Ann, additional, Daniels, Anthony, additional, Shah, Amish C., additional, Dimaras, Helen, additional, Nagarajan, Rajaram, additional, Hayashi, Robert J., additional, Schmidt, Mary Lou, additional, Chintagumpala, Murali M., additional, Herzog, Cynthia E., additional, Luna-Fineman, Sandra, additional, Fraley, Claire Elyse, additional, Weinstein, Joanna, additional, Olson, Thomas Arthur, additional, Crooks, Bruce, additional, Schwartz, Cindy L., additional, and Neglia, Joseph Philip, additional

Published
2022
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19. IMMU-13. Dual CTLA4/ PD-1 blockade improves survival for replication-repair deficient high-grade gliomas failing single agent PD-1 inhibition: An IRRDC study

Author

Das, Anirban, primary, Morgenstern, Daniel, additional, Bianchi, Vanessa, additional, Sudhaman, Sumedha, additional, Edwards, Melissa, additional, Stengs, Lucie, additional, Larouche, Valerie, additional, Samuel, David, additional, Van Damme, An, additional, Gass, David, additional, Ziegler, David, additional, Bielack, Stefan, additional, Zelcer, Shayna, additional, Yalon, Michal, additional, Constantini, Shlomi, additional, Sarosiek, Tomasz, additional, Libionka, Witold, additional, Nichols, Kim, additional, De Mola, Rebecca Loret, additional, Bielamowicz, Kevin, additional, Sabel, Magnus, additional, Frojd, Charlotta, additional, Wood, Matthew D, additional, Migueis, Joana Cristiano Sous, additional, Abongwa, Chenue, additional, Yen, Lee Yi, additional, Stearns, Duncan, additional, Opocher, Enrico, additional, Bhatia, Kanika, additional, Sen, Santanu, additional, Cantero, Eduardo Quiroga, additional, Paez, Palma Solano, additional, Crooks, Bruce, additional, Magimairajan, Vanan, additional, Reddy, Alyssa, additional, Adamski, Jenny, additional, Mason, Gary, additional, Lindhorst, Scott, additional, Aronson, Melyssa, additional, Ertl-Wagner, Birgit, additional, Hawkins, Cynthia, additional, Bouffet, Eric, additional, and Tabori, Uri, additional

Published
2022
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23. Diagnostics and prospective outcome of a diffuse glioneuronal tumor with oligodendroglioma-like features and nuclear clusters after surgical resection (DGONC): a case report

Author

Howie, Chelsea, primary, Ahmad, Tahani, additional, McFadden, Kathryn, additional, Crooks, Bruce, additional, McNeely, P Daniel, additional, Walling, Simon, additional, Rutledge, Robert, additional, Sahm, Felix, additional, Hinz, Felix, additional, Jabado, Nada, additional, Kieran, Mark, additional, and Erker, Craig, additional

Published
2022
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24. Tisagenlecleucel Therapy Is Safe and Effective for Children with Down Syndrome with ALL in First Relapse

Author

Krueger, Joerg, primary, Hitzler, Johann K, additional, Mourad, Stephanie Audrey, additional, Bassal, Mylene, additional, Cairney, Elizabeth, additional, Crooks, Bruce N., additional, Punnett, Angela, additional, Alexander, Sarah, additional, Ali, Muhammad, additional, Bittencourt, Henrique, additional, Whitlock, James A., additional, and Gupta, Sumit, additional

Published
2021
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25. Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer

Author

Oberoi, Sapna, primary, Protudjer, Jennifer L. P., additional, Rapoport, Adam, additional, Rassekh, Shahrad R., additional, Crooks, Bruce, additional, Siden, Harold, additional, Decker, Kathleen, additional, Ananth, Prasanna, additional, Chapman, Stacy, additional, Balneaves, Lynda G., additional, Vanan, Magimairajan Issai, additional, and Kelly, Lauren E., additional

Published
2021
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29. Life without mismatch repair

Author

Sanders, Mathijs A., primary, Vöhringer, Harald, additional, Forster, Victoria J., additional, Moore, Luiza, additional, Campbell, Brittany B., additional, Hooks, Yvette, additional, Edwards, Melissa, additional, Bianchi, Vanessa, additional, Coorens, Tim H. H., additional, Butler, Timothy M., additional, Lee-Six, Henry, additional, Robinson, Philip S., additional, Flensburg, Christoffer, additional, Bilardi, Rebecca A., additional, Majewski, Ian J., additional, Reschke, Agnes, additional, Cairney, Elizabeth, additional, Crooks, Bruce, additional, Lindhorst, Scott, additional, Stearns, Duncan, additional, Tomboc, Patrick, additional, McDermott, Ultan, additional, Stratton, Michael R., additional, Shlien, Adam, additional, Gerstung, Moritz, additional, Tabori, Uri, additional, and Campbell, Peter J., additional

Published
2021
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31. Canadian Pediatric Neuro-Oncology Standards of Practice

Author

Bennett, Julie, primary, Erker, Craig, additional, Lafay-Cousin, Lucie, additional, Ramaswamy, Vijay, additional, Hukin, Juliette, additional, Vanan, Magimairajan I., additional, Cheng, Sylvia, additional, Coltin, Hallie, additional, Fonseca, Adriana, additional, Johnston, Donna, additional, Lo, Andrea, additional, Zelcer, Shayna, additional, Alvi, Saima, additional, Bowes, Lynette, additional, Brossard, Josée, additional, Charlebois, Janie, additional, Eisenstat, David, additional, Felton, Kathleen, additional, Fleming, Adam, additional, Jabado, Nada, additional, Larouche, Valérie, additional, Legault, Geneviève, additional, Mpofu, Chris, additional, Perreault, Sébastien, additional, Silva, Mariana, additional, Sinha, Roona, additional, Strother, Doug, additional, Tsang, Derek S., additional, Wilson, Beverly, additional, Crooks, Bruce, additional, and Bartels, Ute, additional

Published
2020
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32. MBCL-24. CAN YOUNG CHILDREN WITH RELAPSED MEDULLOBLASTOMA BE SALVAGED AFTER INITIAL IRRADIATION-SPARING APPROACHES?

Author

Erker, Craig, primary, Larouche, Valérie, additional, Margol, Ashley, additional, Cacciotti, Chantel, additional, Perreault, Sébastien, additional, Cohen, Kenneth J, additional, AbdelBaki, Mohamed S, additional, Hukin, Juliette, additional, Rassekh, Shahrad Rod, additional, Eisenstat, David D, additional, Wilson, Beverly, additional, Knipstein, Jeffrey, additional, Hoppmann, Anna L, additional, Sandler, Eric S, additional, Dorris, Kathleen, additional, Fay-McClymont, Taryn B, additional, Salloum, Ralph, additional, Harrod, Virginia L, additional, Crooks, Bruce, additional, Finlay, Jonathan L, additional, Bouffet, Eric, additional, and Lafay-Cousin, Lucie, additional

Published
2020
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33. HGG-20. DIAGNOSTIC AND BIOLOGICAL ROLE OF METHYLATION PATTERNS IN REPLICATION REPAIR DEFICIENT HIGH GRADE GLIOMAS

Author

Dodgshun, Andrew, primary, Fukuoka, Kohei, additional, Edwards, Melissa, additional, Bianchi, Vanessa, additional, Sexton-Oates, Alexandra, additional, Larouche, Valerie, additional, Magimairajan, Vanan, additional, Lindhorst, Scott, additional, Yalon, Michal, additional, Mason, Gary, additional, Crooks, Bruce, additional, Constantini, Shlomi, additional, Massimino, Maura, additional, Chiaravalli, Stefano, additional, Ramdas, Jagadeesh, additional, Mason, Warren, additional, Shamvil, Ashraf, additional, Farah, Roula, additional, Van Damme, An, additional, Opocher, Enrico, additional, Hamid, Syed Ahmer, additional, Ziegler, David, additional, Samuel, David, additional, Cole, Kristina A, additional, Tomboc, Patrick, additional, Stearns, Duncan, additional, Thomas, Gregory, additional, Lossos, Alexander, additional, Sullivan, Michael, additional, Hansford, Jordan R, additional, Jones, David, additional, Mackay, Alan, additional, Jones, Chris, additional, Ramaswamy, Vijay, additional, Hawkins, Cynthia, additional, Bouffet, Eric, additional, and Tabori, Uri, additional

Published
2020
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35. NCOG-47. CAN YOUNG CHILDREN WITH RELAPSED MEDULLOBLASTOMA BE SALVAGED AFTER INITIAL IRRADIATION-SPARING APPROACHES?

Author

Erker, Craig, primary, Larouche, Valérie, additional, Aguilera, Dolly, additional, Margol, Ashley, additional, Cacciotti, Chantel, additional, Perreault, Sébastien, additional, Cohen, Kenneth J, additional, AbdelBaki, Mohamed, additional, Hukin, Juliette, additional, Rassekh, Shahrad Rod, additional, Eisenstat, David D, additional, Wilson, Beverly, additional, Hoppman, Anna L, additional, Dhall, Girish, additional, Holly, Taylor, additional, Knipstein, Jeffrey, additional, Sandler, Eric S, additional, Klawinski, Darren, additional, Dorris, Kathleen, additional, Fay-McClymont, Taryn B, additional, Salloum, Ralph, additional, Harrod, Virginia L, additional, Crooks, Bruce, additional, Ramaswamy, Vijay, additional, Finlay, Jonathan, additional, Bouffet, Eric, additional, and Lafay-Cousin, Lucie, additional

Published
2020
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36. Effect of different conditioning regimens on survival and engraftment for children with hemophagocytic lymphohistiocytosis undergoing allogeneic hematopoeitic stem cell transplantation: A single institution experience

Author

Ali, Salah, primary, Wall, Donna A., additional, Ali, Muhammad, additional, Chiang, Kuang‐Yueh, additional, Naqvi, Ahmed, additional, Weitzman, Sheila, additional, Gassas, Adam, additional, Gibson, Paul, additional, Brager, Rae, additional, Fernandez, Conrad V., additional, Crooks, Bruce, additional, Schechter, Tal, additional, and Krueger, Joerg, additional

Published
2020
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38. 101 Re-Irradiation for Children with Recurrent Supratentorial High-Grade Glioma

Author

Oliveira, Carol, primary, Laperriere, Normand J., additional, Bouffet, Eric, additional, Hawkins, Cynthia, additional, Ramaswamy, Vijay, additional, Yee, Ryan, additional, Tabori, Uri, additional, Bartels, Ute, additional, Huang, Annie, additional, Millar, Barbara-Ann, additional, Crooks, Bruce, additional, Bowes, Lynette, additional, Zelcer, Shayna, additional, and Tsang, Derek S., additional

Published
2019
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39. Alterations in ALK/ROS1/NTRK/MET drive a group of infantile hemispheric gliomas

Author

Guerreiro Stucklin, Ana S., primary, Ryall, Scott, additional, Fukuoka, Kohei, additional, Zapotocky, Michal, additional, Lassaletta, Alvaro, additional, Li, Christopher, additional, Bridge, Taylor, additional, Kim, Byungjin, additional, Arnoldo, Anthony, additional, Kowalski, Paul E., additional, Zhong, Yvonne, additional, Johnson, Monique, additional, Li, Claire, additional, Ramani, Arun K., additional, Siddaway, Robert, additional, Nobre, Liana Figueiredo, additional, de Antonellis, Pasqualino, additional, Dunham, Christopher, additional, Cheng, Sylvia, additional, Boué, Daniel R., additional, Finlay, Jonathan L., additional, Coven, Scott L., additional, de Prada, Inmaculada, additional, Perez-Somarriba, Marta, additional, Faria, Claudia C., additional, Grotzer, Michael A., additional, Rushing, Elisabeth, additional, Sumerauer, David, additional, Zamecnik, Josef, additional, Krskova, Lenka, additional, Garcia Ariza, Miguel, additional, Cruz, Ofelia, additional, Morales La Madrid, Andres, additional, Solano, Palma, additional, Terashima, Keita, additional, Nakano, Yoshiko, additional, Ichimura, Koichi, additional, Nagane, Motoo, additional, Sakamoto, Hiroaki, additional, Gil-da-Costa, Maria Joao, additional, Silva, Roberto, additional, Johnston, Donna L., additional, Michaud, Jean, additional, Wilson, Bev, additional, van Landeghem, Frank K. H., additional, Oviedo, Angelica, additional, McNeely, P. Daniel, additional, Crooks, Bruce, additional, Fried, Iris, additional, Zhukova, Nataliya, additional, Hansford, Jordan R., additional, Nageswararao, Amulya, additional, Garzia, Livia, additional, Shago, Mary, additional, Brudno, Michael, additional, Irwin, Meredith S., additional, Bartels, Ute, additional, Ramaswamy, Vijay, additional, Bouffet, Eric, additional, Taylor, Michael D., additional, Tabori, Uri, additional, and Hawkins, Cynthia, additional

Published
2019
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40. Repeat irradiation for children with supratentorial high‐grade glioma

Author

Tsang, Derek S., primary, Oliveira, Carol, additional, Bouffet, Eric, additional, Hawkins, Cynthia, additional, Ramaswamy, Vijay, additional, Yee, Ryan, additional, Tabori, Uri, additional, Bartels, Ute, additional, Huang, Annie, additional, Millar, Barbara‐Ann, additional, Crooks, Bruce, additional, Bowes, Lynette, additional, Zelcer, Shayna, additional, and Laperriere, Normand, additional

Published
2019
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41. Functional Repair Assay for the Diagnosis of Constitutional Mismatch Repair Deficiency From Non-Neoplastic Tissue

Author

Shuen, Andrew Y., primary, Lanni, Stella, additional, Panigrahi, Gagan B., additional, Edwards, Melissa, additional, Yu, Lisa, additional, Campbell, Brittany B., additional, Mandel, Ariane, additional, Zhang, Cindy, additional, Zhukova, Nataliya, additional, Alharbi, Musa, additional, Bernstein, Mark, additional, Bowers, Daniel C., additional, Carroll, Sara, additional, Cole, Kristina A., additional, Constantini, Shlomi, additional, Crooks, Bruce, additional, Dvir, Rina, additional, Farah, Roula, additional, Hijiya, Nobuko, additional, George, Ben, additional, Laetsch, Theodore W., additional, Larouche, Valerie, additional, Lindhorst, Scott, additional, Luiten, Rebecca C., additional, Magimairajan, Vanan, additional, Mason, Gary, additional, Mason, Warren, additional, Mordechai, Oz, additional, Mushtaq, Naureen, additional, Nicholas, Garth, additional, Oren, Michael, additional, Palma, Laura, additional, Pedroza, Luis Alberto, additional, Ramdas, Jagadeesh, additional, Samuel, David, additional, Wolfe Schneider, Kami, additional, Seeley, Andrea, additional, Semotiuk, Kara, additional, Shamvil, Ashraf, additional, Sumerauer, David, additional, Toledano, Helen, additional, Tomboc, Patrick, additional, Wierman, Margaret, additional, Van Damme, An, additional, Lee, Yi-Yen, additional, Zapotocky, Michal, additional, Bouffet, Eric, additional, Durno, Carol, additional, Aronson, Melyssa, additional, Gallinger, Steve, additional, Foulkes, William D., additional, Malkin, David, additional, Tabori, Uri, additional, and Pearson, Christopher E., additional

Published
2019
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42. HGG-20. DNA METHYLATION ANALYSIS OF HIGH-GRADE GLIOMA IN PATIENTS WITH MISMATCH REPAIR DEFICIENCIES

Author

Dodgshun, Andrew, primary, Fukuoka, Kohei, additional, Campbell, Brittany, additional, Edwards, Melissa, additional, Sexton-Oates, Alexandra, additional, Larouche, Valérie, additional, Magimairajan, Vanan, additional, Lindhorst, Scott, additional, Oren, Michal, additional, Mason, Gary, additional, Crooks, Bruce, additional, Constantini, Shlomi, additional, Massimino, Maura, additional, Chiaravalli, Stefano, additional, Ramdas, Jagadeesh, additional, Mason, Warren, additional, Shamvil, Ashraf, additional, Farah, Roula, additional, van Damme, An, additional, Opocher, Enrico, additional, Hamid, Syed Ahmer, additional, Ziegler, David, additional, Samuel, David, additional, Cole, Kristina A, additional, Tomboc, Patrick, additional, Stearns, Duncan, additional, Thomas, Gregory, additional, Lossos, Alexander, additional, Saffery, Richard, additional, Sullivan, Michael, additional, Hansford, Jordan R, additional, Jones, David, additional, and Tabori, Uri, additional

Published
2018
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45. A Case Series of TERC Varianttelomere Biology Disorders in Unrelated Families from Eastern Canada

Author

Harrigan, Amye M., MacDonald, Shelley, Crooks, Bruce N., Dyack, Sarah, and Trottier, Amy M.

Abstract

TERCvariant telomere biology disorders are a rare and heterogenous group of disorders that arise from germline variants in TERC, a gene that encodes for the RNA component of telomerase. Variants in TERClead to accelerated telomere attrition and can manifest as a wide array of clinical phenotypes affecting multiple organ systems. In this case series, we aim to add to the literature describing TERCvariant telomere biology disorders by reporting cases from two unrelated families from Eastern Canada, one of whom was found to have a novel germline TERCvariant and the other had a unique phenotypic presentation of previously described TERCvariant.

Published
2020
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46. Outcomes of Infants and Young Children With Relapsed Medulloblastoma After Initial Craniospinal Irradiation-Sparing Approaches: An International Cohort Study.

Author

Erker C, Mynarek M, Bailey S, Mazewski CM, Baroni L, Massimino M, Hukin J, Aguilera D, Cappellano AM, Ramaswamy V, Lassaletta A, Perreault S, Kline CN, Rajagopal R, Michaiel G, Zapotocky M, Santa-Maria Lopez V, La Madrid AM, Cacciotti C, Sandler ES, Hoffman LM, Klawinski D, Khan S, Salloum R, Hoppmann AL, Larouche V, Dorris K, Toledano H, Gilheeney SW, Abdelbaki MS, Wilson B, Tsang DS, Knipstein J, Oren MY, Shah S, Murray JC, Ginn KF, Wang ZJ, Fleischhack G, Obrecht D, Tonn S, Harrod VL, Matheson K, Crooks B, Strother DR, Cohen KJ, Hansford JR, Mueller S, Margol A, Gajjar A, Dhall G, Finlay JL, Northcott PA, Rutkowski S, Clifford SC, Robinson G, Bouffet E, and Lafay-Cousin L

Subjects
Child, Humans, Infant, Child, Preschool, Cohort Studies, Prospective Studies, Hedgehog Proteins, Neoplasm Recurrence, Local, Chronic Disease, Medulloblastoma radiotherapy, Craniospinal Irradiation adverse effects, Brain Neoplasms therapy, Cerebellar Neoplasms radiotherapy
Abstract

Purpose: Infant and young childhood medulloblastoma (iMB) is usually treated without craniospinal irradiation (CSI) to avoid neurocognitive late effects. Unfortunately, many children relapse. The purpose of this study was to assess salvage strategies and prognostic features of patients with iMB who relapse after CSI-sparing therapy., Methods: We assembled a large international cohort of 380 patients with relapsed iMB, age younger than 6 years, and initially treated without CSI. Univariable and multivariable Cox models of postrelapse survival (PRS) were conducted for those treated with curative intent using propensity score analyses to account for confounding factors., Results: The 3-year PRS, for 294 patients treated with curative intent, was 52.4% (95% CI, 46.4 to 58.3) with a median time to relapse from diagnosis of 11 months. Molecular subgrouping was available for 150 patients treated with curative intent, and 3-year PRS for sonic hedgehog (SHH), group 4, and group 3 were 60%, 84%, and 18% ( P = .0187), respectively. In multivariable analysis, localized relapse ( P = .0073), SHH molecular subgroup ( P = .0103), CSI use after relapse ( P = .0161), and age ≥ 36 months at initial diagnosis ( P = .0494) were associated with improved survival. Most patients (73%) received salvage CSI, and although salvage chemotherapy was not significant in multivariable analysis, its use might be beneficial for a subset of children receiving salvage CSI < 35 Gy ( P = .007)., Conclusion: A substantial proportion of patients with relapsed iMB are salvaged after initial CSI-sparing approaches. Patients with SHH subgroup, localized relapse, older age at initial diagnosis, and those receiving salvage CSI show improved PRS. Future prospective studies should investigate optimal CSI doses and the role of salvage chemotherapy in this population., Competing Interests: Craig ErkerConsulting or Advisory Role: Novartis Canada Pharmaceuticals Inc Martin MynarekEmployment: Novartis, BioNTech SE Maura MassiminoConsulting or Advisory Role: Oncoscience, Novartis Juliette HukinStock and Other Ownership Interests: AbbVieConsulting or Advisory Role: AstraZeneca, Novartis Vijay RamaswamyHonoraria: AstraZenecaConsulting or Advisory Role: AstraZeneca Canada Alvaro LassalettaStock and Other Ownership Interests: Gilead SciencesConsulting or Advisory Role: Jazz Pharmaceuticals, Servier, Alexion Pharmaceuticals Sébastien PerreaultLeadership: BayerStock and Other Ownership Interests: NovocureHonoraria: BayerConsulting or Advisory Role: BayerSpeakers' Bureau: BayerExpert Testimony: Bayer Cassie N. KlineResearch Funding: Regeneron (Inst), Curis (Inst), Midatech Pharma (Inst), Ipsen (Inst), Day One Therapeutics (Inst), Bristol Myers Squibb (Inst), Kazia Therapeutics (Inst), Chimerix (Inst) Eric S. SandlerConsulting or Advisory Role: Protara Therapeutics Lindsey M. HoffmanHonoraria: AstraZeneca Kathleen DorrisStock and Other Ownership Interests: Amgen, Gilead SciencesConsulting or Advisory Role: Day One Biopharmaceuticals Helen ToledanoConsulting or Advisory Role: AstraZeneca, Novartis Derek S. TsangTravel, Accommodations, Expenses: Mevion Medical Systems Jeffrey KnipsteinEmployment: PRA Health Sciences, ServierConsulting or Advisory Role: Atheneum Zhihong J. WangHonoraria: AstraZenecaConsulting or Advisory Role: AstraZenecaSpeakers' Bureau: AstraZeneca Kenneth J. CohenConsulting or Advisory Role: Novartis, Bristol Myers Squibb, DNAtrixResearch Funding: Novartis, Bristol Myers Squibb Jordan R. HansfordStock and Other Ownership Interests: AnteotechConsulting or Advisory Role: Bayer Sabine MuellerResearch Funding: Regeneron (Inst), DayOne Pharmaceuticals (Inst), Curis Pharamceuticals (Inst), Curis Pharamceuticals (Inst), Bristol Myers Squibb (Inst) Amar GajjarConsulting or Advisory Role: Roche/Genentech, QED Therapeutics, Day One Therapeutics, Geanno BioResearch Funding: Genentech (Inst), Kazia Therapeutics (Inst) Stefan RutkowskiConsulting or Advisory Role: Bristol Myers Squibb GmbH & Co. KGaA, Germany, Celgene, Roche Pharma AG, Grenzach-Wyhlen, Bayer Germany Giles RobinsonResearch Funding: Novartis (Inst), Genentech/Roche (Inst), Novartis (Inst), SpringWorks Therapeutics (Inst) Eric BouffetConsulting or Advisory Role: NovartisResearch Funding: Roche (Inst) Lucie Lafay-CousinHonoraria: Servier, Innomar StrategiesNo other potential conflicts of interest were reported.

Published
2023
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47. Removing barriers to accessing medical cannabis for paediatric patients.

Author

Huntsman RJ, Elliott J, Lewis E, Moore-Hepburn C, Alcorn J, Mansell H, Appendino JP, Bélanger RE, Corley S, Crooks B, Denny AM, Finkelstein Y, Finley A, Fung R, Gilpin A, Litalien C, Jacobs J, Oberlander TF, Palm A, Palm J, Polewicz M, Quinn D, Rassekh SR, Repetski A, Rieder MJ, Robson-McKay A, Seifert B, Shackelford A, Siden H, Szafron M, 't Jong G, Vaillancourt R, and Kelly LE

Abstract

Medical cannabis (MC) may offer therapeutic benefits for children with complex neurological conditions and chronic diseases. In Canada, parents, and caregivers frequently report encountering barriers when accessing MC for their children. These include negative preconceived notions about risks and benefits, challenges connecting with a knowledgeable healthcare provider (HCP), the high cost of MC products, and navigating MC product shortages. In this manuscript, we explore several of these barriers and provide recommendations to decision-makers to enable a family-centered and evidence-based approach to MC medicine and research for children., Competing Interests: RJH and LEK served on Health Canada’s Scientific Advisory Committee on Health Products Containing Cannabis whose views are not reflected in this manuscript. RJH received a grant from the Jim Pattison Children’s Hospital Foundation for a study on medical cannabis in childhood refractory epilepsy and was Co-Chair, Health Canada Scientific Advisory Committee on Health Products Containing Cannabis (an unpaid position). EL received speaking fees from Spectrum Therapeutics and holds leadership positions in the following groups: Jamaican Medical Cannabis Corporation (unpaid position), Medical Cannabis Clinicians Society (UK), Canadian Collaborative for Childhood Cannabinoid Therapeutics, MedCan Support and Canadian Patient Advocacy & Support Services. CM-H is the controlling shareholder of a small publicly traded company that made an incremental $1.7M investment in a biotechnology company involved in medical research related to minor cannabinoids. JA has participated in an advisory board for Zyus Life Science. REB is a member of the Advisory Council, Drug-Free Kids Canada, and was Co-Chair of the Cannabis Project Advisory Group, Canadian Paediatric Society (both unpaid positions). SC holds a leadership position on the Network of Networks (N2) Board of Directors. AG reports that this article was researched and written prior to her employment at Health Canada and any views, opinions, and recommendations expressed within are those of the authors and do not reflect the position of Health Canada and/or the Government of Canada. JJ received grants from NSERC, CIHR, AMA Pediatrics, and Alberta Children’s Hospital Foundation, consulting fees from EISAI, UCB, and PENDOPHARM, payment/honoraria from EISAI, UCB, PENDOPHARM, and SUNOVION, and travel reimbursement from Neurocrine. JJ also holds leadership positions in the American Epilepsy Society, the Canadian League Against Epilepsy, and Hope for Hypothalamic Hamartomas. MJR is a member of the Paediatrics & Child Health editorial board. Another editor was responsible for overseeing the peer review of this manuscript. AS is the founder of Shackelford Pharma., an emerging medical cannabis company. There is also a provisional patent application filed, but not yet issued, on behalf of Shackelford Pharma, Inc. RV was director of the Department of Pediatric Pharmacy, Children’s Hospital of Eastern Ontario when this manuscript was written and submitted for publication but is now Vice President of Pharmacy Affairs for BCE Pharma. He has received consulting fees from Harvest Medicine Clinic and recently concluded an 8-year term as a Director of the International Pharmaceutical Federation Foundation. LEK holds a Board of Directors position at the Canadian Consortium for the Investigation of Cannabinoids and holds funding from the Canadian Institutes of Health Research, the Canadian Cancer Society, and the SickKids Foundation for C4T. She holds a Mitacs Accelerate grant for a separate project in partnership with Canopy Growth. There are no other disclosures., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Canadian Paediatric Society.)

Published
2023
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