The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease.
Identifieur interne : 000D99 ( PubMed/Corpus ); précédent : 000D98; suivant : 000E00The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease.
Auteurs : Joshua Baugh ; Ute Bartels ; James Leach ; Blaise Jones ; Brooklyn Chaney ; Katherine E. Warren ; Jenavieve Kirkendall ; Renee Doughman ; Cynthia Hawkins ; Lili Miles ; Christine Fuller ; Tim Hassall ; Eric Bouffet ; Adam Lane ; Darren Hargrave ; Jacques Grill ; Lindsey M. Hoffman ; Chris Jones ; Alex Towbin ; Sharon A. Savage ; Michelle Monje ; Xiao-Nan Li ; David S. Ziegler ; Sophie Veldhuijzen Van Zanten ; Christof M. Kramm ; Dannis G. Van Vuurden ; Maryam FouladiSource :
- Journal of neuro-oncology [ 1573-7373 ] ; 2017.
Abstract
Diffuse intrinsic pontine glioma (DIPG), a rare, often fatal childhood brain tumor, remains a major therapeutic challenge. In 2012, investigators, funded by the DIPG Collaborative (a philanthropic partnership among 29 private foundations), launched the International DIPG Registry (IDIPGR) to advance understanding of DIPG. Comprised of comprehensive deidentified but linked clinical, imaging, histopathological, and genomic repositories, the IDIPGR uses standardized case report forms for uniform data collection; serial imaging and histopathology are centrally reviewed by IDIPGR neuro-radiologists and neuro-pathologists, respectively. Tissue and genomic data, and cell cultures derived from autopsies coordinated by the IDIPGR are available to investigators for studies approved by the Scientific Advisory Committee. From April 2012 to December 2016, 670 patients diagnosed with DIPG have been enrolled from 55 participating institutions in the US, Canada, Australia and New Zealand. The radiology repository contains 3558 studies from 448 patients. The pathology repository contains tissue on 81 patients with another 98 samples available for submission. Fresh DIPG tissue from seven autopsies has been sent to investigators to develop primary cell cultures. The bioinformatics repository contains next-generation sequencing data on 66 tumors. Nine projects using data/tissue from the IDIPGR by 13 principle investigators from around the world are now underway. The IDIPGR, a successful alliance among philanthropic agencies and investigators, has developed and maintained a highly collaborative, hypothesis-driven research infrastructure for interdisciplinary and translational projects in DIPG to improve diagnosis, response assessment, treatment and outcome for patients.
DOI: 10.1007/s11060-017-2372-5
PubMed: 28093680
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease.</title><author><name sortKey="Baugh, Joshua" sort="Baugh, Joshua" uniqKey="Baugh J" first="Joshua" last="Baugh">Joshua Baugh</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Bartels, Ute" sort="Bartels, Ute" uniqKey="Bartels U" first="Ute" last="Bartels">Ute Bartels</name><affiliation><nlm:affiliation>Hospital for Sick Children, Toronto, ON, Canada.</nlm:affiliation></affiliation></author><author><name sortKey="Leach, James" sort="Leach, James" uniqKey="Leach J" first="James" last="Leach">James Leach</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Jones, Blaise" sort="Jones, Blaise" uniqKey="Jones B" first="Blaise" last="Jones">Blaise Jones</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Chaney, Brooklyn" sort="Chaney, Brooklyn" uniqKey="Chaney B" first="Brooklyn" last="Chaney">Brooklyn Chaney</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Warren, Katherine E" sort="Warren, Katherine E" uniqKey="Warren K" first="Katherine E" last="Warren">Katherine E. Warren</name><affiliation><nlm:affiliation>National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Kirkendall, Jenavieve" sort="Kirkendall, Jenavieve" uniqKey="Kirkendall J" first="Jenavieve" last="Kirkendall">Jenavieve Kirkendall</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Doughman, Renee" sort="Doughman, Renee" uniqKey="Doughman R" first="Renee" last="Doughman">Renee Doughman</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hawkins, Cynthia" sort="Hawkins, Cynthia" uniqKey="Hawkins C" first="Cynthia" last="Hawkins">Cynthia Hawkins</name><affiliation><nlm:affiliation>Hospital for Sick Children, Toronto, ON, Canada.</nlm:affiliation></affiliation></author><author><name sortKey="Miles, Lili" sort="Miles, Lili" uniqKey="Miles L" first="Lili" last="Miles">Lili Miles</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Fuller, Christine" sort="Fuller, Christine" uniqKey="Fuller C" first="Christine" last="Fuller">Christine Fuller</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hassall, Tim" sort="Hassall, Tim" uniqKey="Hassall T" first="Tim" last="Hassall">Tim Hassall</name><affiliation><nlm:affiliation>Lady Cilento Children's Hospital, Brisbane, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Bouffet, Eric" sort="Bouffet, Eric" uniqKey="Bouffet E" first="Eric" last="Bouffet">Eric Bouffet</name><affiliation><nlm:affiliation>Hospital for Sick Children, Toronto, ON, Canada.</nlm:affiliation></affiliation></author><author><name sortKey="Lane, Adam" sort="Lane, Adam" uniqKey="Lane A" first="Adam" last="Lane">Adam Lane</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hargrave, Darren" sort="Hargrave, Darren" uniqKey="Hargrave D" first="Darren" last="Hargrave">Darren Hargrave</name><affiliation><nlm:affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Grill, Jacques" sort="Grill, Jacques" uniqKey="Grill J" first="Jacques" last="Grill">Jacques Grill</name><affiliation><nlm:affiliation>Gustave Roussy Institute, Villejuif, France.</nlm:affiliation></affiliation></author><author><name sortKey="Hoffman, Lindsey M" sort="Hoffman, Lindsey M" uniqKey="Hoffman L" first="Lindsey M" last="Hoffman">Lindsey M. Hoffman</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Jones, Chris" sort="Jones, Chris" uniqKey="Jones C" first="Chris" last="Jones">Chris Jones</name><affiliation><nlm:affiliation>Institute of Cancer Research, Sutton, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Towbin, Alex" sort="Towbin, Alex" uniqKey="Towbin A" first="Alex" last="Towbin">Alex Towbin</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Savage, Sharon A" sort="Savage, Sharon A" uniqKey="Savage S" first="Sharon A" last="Savage">Sharon A. Savage</name><affiliation><nlm:affiliation>National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Monje, Michelle" sort="Monje, Michelle" uniqKey="Monje M" first="Michelle" last="Monje">Michelle Monje</name><affiliation><nlm:affiliation>Stanford University and Lucile Packard Children's Hospital, Palo Alto, CA, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Li, Xiao Nan" sort="Li, Xiao Nan" uniqKey="Li X" first="Xiao-Nan" last="Li">Xiao-Nan Li</name><affiliation><nlm:affiliation>Texas Children's Hospital, Houston, TX, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Ziegler, David S" sort="Ziegler, David S" uniqKey="Ziegler D" first="David S" last="Ziegler">David S. Ziegler</name><affiliation><nlm:affiliation>Sydney Children's Hospital, Randwick, NSW, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Veldhuijzen Van Zanten, Sophie" sort="Veldhuijzen Van Zanten, Sophie" uniqKey="Veldhuijzen Van Zanten S" first="Sophie" last="Veldhuijzen Van Zanten">Sophie Veldhuijzen Van Zanten</name><affiliation><nlm:affiliation>VU University Medical Center, Amsterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Kramm, Christof M" sort="Kramm, Christof M" uniqKey="Kramm C" first="Christof M" last="Kramm">Christof M. Kramm</name><affiliation><nlm:affiliation>University of Göttingen, Göttingen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Van Vuurden, Dannis G" sort="Van Vuurden, Dannis G" uniqKey="Van Vuurden D" first="Dannis G" last="Van Vuurden">Dannis G. Van Vuurden</name><affiliation><nlm:affiliation>VU University Medical Center, Amsterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Fouladi, Maryam" sort="Fouladi, Maryam" uniqKey="Fouladi M" first="Maryam" last="Fouladi">Maryam Fouladi</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA. maryam.fouladi@cchmc.org.</nlm:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2017">2017</date><idno type="RBID">pubmed:28093680</idno><idno type="pmid">28093680</idno><idno type="doi">10.1007/s11060-017-2372-5</idno><idno type="wicri:Area/PubMed/Corpus">000D99</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000D99</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease.</title><author><name sortKey="Baugh, Joshua" sort="Baugh, Joshua" uniqKey="Baugh J" first="Joshua" last="Baugh">Joshua Baugh</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Bartels, Ute" sort="Bartels, Ute" uniqKey="Bartels U" first="Ute" last="Bartels">Ute Bartels</name><affiliation><nlm:affiliation>Hospital for Sick Children, Toronto, ON, Canada.</nlm:affiliation></affiliation></author><author><name sortKey="Leach, James" sort="Leach, James" uniqKey="Leach J" first="James" last="Leach">James Leach</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Jones, Blaise" sort="Jones, Blaise" uniqKey="Jones B" first="Blaise" last="Jones">Blaise Jones</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Chaney, Brooklyn" sort="Chaney, Brooklyn" uniqKey="Chaney B" first="Brooklyn" last="Chaney">Brooklyn Chaney</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Warren, Katherine E" sort="Warren, Katherine E" uniqKey="Warren K" first="Katherine E" last="Warren">Katherine E. Warren</name><affiliation><nlm:affiliation>National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Kirkendall, Jenavieve" sort="Kirkendall, Jenavieve" uniqKey="Kirkendall J" first="Jenavieve" last="Kirkendall">Jenavieve Kirkendall</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Doughman, Renee" sort="Doughman, Renee" uniqKey="Doughman R" first="Renee" last="Doughman">Renee Doughman</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hawkins, Cynthia" sort="Hawkins, Cynthia" uniqKey="Hawkins C" first="Cynthia" last="Hawkins">Cynthia Hawkins</name><affiliation><nlm:affiliation>Hospital for Sick Children, Toronto, ON, Canada.</nlm:affiliation></affiliation></author><author><name sortKey="Miles, Lili" sort="Miles, Lili" uniqKey="Miles L" first="Lili" last="Miles">Lili Miles</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Fuller, Christine" sort="Fuller, Christine" uniqKey="Fuller C" first="Christine" last="Fuller">Christine Fuller</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hassall, Tim" sort="Hassall, Tim" uniqKey="Hassall T" first="Tim" last="Hassall">Tim Hassall</name><affiliation><nlm:affiliation>Lady Cilento Children's Hospital, Brisbane, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Bouffet, Eric" sort="Bouffet, Eric" uniqKey="Bouffet E" first="Eric" last="Bouffet">Eric Bouffet</name><affiliation><nlm:affiliation>Hospital for Sick Children, Toronto, ON, Canada.</nlm:affiliation></affiliation></author><author><name sortKey="Lane, Adam" sort="Lane, Adam" uniqKey="Lane A" first="Adam" last="Lane">Adam Lane</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Hargrave, Darren" sort="Hargrave, Darren" uniqKey="Hargrave D" first="Darren" last="Hargrave">Darren Hargrave</name><affiliation><nlm:affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Grill, Jacques" sort="Grill, Jacques" uniqKey="Grill J" first="Jacques" last="Grill">Jacques Grill</name><affiliation><nlm:affiliation>Gustave Roussy Institute, Villejuif, France.</nlm:affiliation></affiliation></author><author><name sortKey="Hoffman, Lindsey M" sort="Hoffman, Lindsey M" uniqKey="Hoffman L" first="Lindsey M" last="Hoffman">Lindsey M. Hoffman</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Jones, Chris" sort="Jones, Chris" uniqKey="Jones C" first="Chris" last="Jones">Chris Jones</name><affiliation><nlm:affiliation>Institute of Cancer Research, Sutton, UK.</nlm:affiliation></affiliation></author><author><name sortKey="Towbin, Alex" sort="Towbin, Alex" uniqKey="Towbin A" first="Alex" last="Towbin">Alex Towbin</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Savage, Sharon A" sort="Savage, Sharon A" uniqKey="Savage S" first="Sharon A" last="Savage">Sharon A. Savage</name><affiliation><nlm:affiliation>National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Monje, Michelle" sort="Monje, Michelle" uniqKey="Monje M" first="Michelle" last="Monje">Michelle Monje</name><affiliation><nlm:affiliation>Stanford University and Lucile Packard Children's Hospital, Palo Alto, CA, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Li, Xiao Nan" sort="Li, Xiao Nan" uniqKey="Li X" first="Xiao-Nan" last="Li">Xiao-Nan Li</name><affiliation><nlm:affiliation>Texas Children's Hospital, Houston, TX, USA.</nlm:affiliation></affiliation></author><author><name sortKey="Ziegler, David S" sort="Ziegler, David S" uniqKey="Ziegler D" first="David S" last="Ziegler">David S. Ziegler</name><affiliation><nlm:affiliation>Sydney Children's Hospital, Randwick, NSW, Australia.</nlm:affiliation></affiliation></author><author><name sortKey="Veldhuijzen Van Zanten, Sophie" sort="Veldhuijzen Van Zanten, Sophie" uniqKey="Veldhuijzen Van Zanten S" first="Sophie" last="Veldhuijzen Van Zanten">Sophie Veldhuijzen Van Zanten</name><affiliation><nlm:affiliation>VU University Medical Center, Amsterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Kramm, Christof M" sort="Kramm, Christof M" uniqKey="Kramm C" first="Christof M" last="Kramm">Christof M. Kramm</name><affiliation><nlm:affiliation>University of Göttingen, Göttingen, Germany.</nlm:affiliation></affiliation></author><author><name sortKey="Van Vuurden, Dannis G" sort="Van Vuurden, Dannis G" uniqKey="Van Vuurden D" first="Dannis G" last="Van Vuurden">Dannis G. Van Vuurden</name><affiliation><nlm:affiliation>VU University Medical Center, Amsterdam, The Netherlands.</nlm:affiliation></affiliation></author><author><name sortKey="Fouladi, Maryam" sort="Fouladi, Maryam" uniqKey="Fouladi M" first="Maryam" last="Fouladi">Maryam Fouladi</name><affiliation><nlm:affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA. maryam.fouladi@cchmc.org.</nlm:affiliation></affiliation></author></analytic><series><title level="j">Journal of neuro-oncology</title><idno type="eISSN">1573-7373</idno><imprint><date when="2017" type="published">2017</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Diffuse intrinsic pontine glioma (DIPG), a rare, often fatal childhood brain tumor, remains a major therapeutic challenge. In 2012, investigators, funded by the DIPG Collaborative (a philanthropic partnership among 29 private foundations), launched the International DIPG Registry (IDIPGR) to advance understanding of DIPG. Comprised of comprehensive deidentified but linked clinical, imaging, histopathological, and genomic repositories, the IDIPGR uses standardized case report forms for uniform data collection; serial imaging and histopathology are centrally reviewed by IDIPGR neuro-radiologists and neuro-pathologists, respectively. Tissue and genomic data, and cell cultures derived from autopsies coordinated by the IDIPGR are available to investigators for studies approved by the Scientific Advisory Committee. From April 2012 to December 2016, 670 patients diagnosed with DIPG have been enrolled from 55 participating institutions in the US, Canada, Australia and New Zealand. The radiology repository contains 3558 studies from 448 patients. The pathology repository contains tissue on 81 patients with another 98 samples available for submission. Fresh DIPG tissue from seven autopsies has been sent to investigators to develop primary cell cultures. The bioinformatics repository contains next-generation sequencing data on 66 tumors. Nine projects using data/tissue from the IDIPGR by 13 principle investigators from around the world are now underway. The IDIPGR, a successful alliance among philanthropic agencies and investigators, has developed and maintained a highly collaborative, hypothesis-driven research infrastructure for interdisciplinary and translational projects in DIPG to improve diagnosis, response assessment, treatment and outcome for patients.</div></front></TEI><pubmed><MedlineCitation Status="In-Process" Owner="NLM"><PMID Version="1">28093680</PMID><DateCreated><Year>2017</Year><Month>01</Month><Day>17</Day></DateCreated><DateRevised><Year>2017</Year><Month>10</Month><Day>30</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1573-7373</ISSN><JournalIssue CitedMedium="Internet"><Volume>132</Volume><Issue>2</Issue><PubDate><Year>2017</Year><Month>Apr</Month></PubDate></JournalIssue><Title>Journal of neuro-oncology</Title><ISOAbbreviation>J. Neurooncol.</ISOAbbreviation></Journal><ArticleTitle>The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease.</ArticleTitle><Pagination><MedlinePgn>323-331</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1007/s11060-017-2372-5</ELocationID><Abstract><AbstractText>Diffuse intrinsic pontine glioma (DIPG), a rare, often fatal childhood brain tumor, remains a major therapeutic challenge. In 2012, investigators, funded by the DIPG Collaborative (a philanthropic partnership among 29 private foundations), launched the International DIPG Registry (IDIPGR) to advance understanding of DIPG. Comprised of comprehensive deidentified but linked clinical, imaging, histopathological, and genomic repositories, the IDIPGR uses standardized case report forms for uniform data collection; serial imaging and histopathology are centrally reviewed by IDIPGR neuro-radiologists and neuro-pathologists, respectively. Tissue and genomic data, and cell cultures derived from autopsies coordinated by the IDIPGR are available to investigators for studies approved by the Scientific Advisory Committee. From April 2012 to December 2016, 670 patients diagnosed with DIPG have been enrolled from 55 participating institutions in the US, Canada, Australia and New Zealand. The radiology repository contains 3558 studies from 448 patients. The pathology repository contains tissue on 81 patients with another 98 samples available for submission. Fresh DIPG tissue from seven autopsies has been sent to investigators to develop primary cell cultures. The bioinformatics repository contains next-generation sequencing data on 66 tumors. Nine projects using data/tissue from the IDIPGR by 13 principle investigators from around the world are now underway. The IDIPGR, a successful alliance among philanthropic agencies and investigators, has developed and maintained a highly collaborative, hypothesis-driven research infrastructure for interdisciplinary and translational projects in DIPG to improve diagnosis, response assessment, treatment and outcome for patients.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Baugh</LastName><ForeName>Joshua</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bartels</LastName><ForeName>Ute</ForeName><Initials>U</Initials><AffiliationInfo><Affiliation>Hospital for Sick Children, Toronto, ON, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Leach</LastName><ForeName>James</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Jones</LastName><ForeName>Blaise</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Chaney</LastName><ForeName>Brooklyn</ForeName><Initials>B</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Warren</LastName><ForeName>Katherine E</ForeName><Initials>KE</Initials><AffiliationInfo><Affiliation>National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kirkendall</LastName><ForeName>Jenavieve</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Doughman</LastName><ForeName>Renee</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hawkins</LastName><ForeName>Cynthia</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Hospital for Sick Children, Toronto, ON, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Miles</LastName><ForeName>Lili</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Fuller</LastName><ForeName>Christine</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hassall</LastName><ForeName>Tim</ForeName><Initials>T</Initials><AffiliationInfo><Affiliation>Lady Cilento Children's Hospital, Brisbane, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bouffet</LastName><ForeName>Eric</ForeName><Initials>E</Initials><AffiliationInfo><Affiliation>Hospital for Sick Children, Toronto, ON, Canada.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Lane</LastName><ForeName>Adam</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hargrave</LastName><ForeName>Darren</ForeName><Initials>D</Initials><AffiliationInfo><Affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Grill</LastName><ForeName>Jacques</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Gustave Roussy Institute, Villejuif, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hoffman</LastName><ForeName>Lindsey M</ForeName><Initials>LM</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Jones</LastName><ForeName>Chris</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Institute of Cancer Research, Sutton, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Towbin</LastName><ForeName>Alex</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Savage</LastName><ForeName>Sharon A</ForeName><Initials>SA</Initials><AffiliationInfo><Affiliation>National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Monje</LastName><ForeName>Michelle</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Stanford University and Lucile Packard Children's Hospital, Palo Alto, CA, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Li</LastName><ForeName>Xiao-Nan</ForeName><Initials>XN</Initials><AffiliationInfo><Affiliation>Texas Children's Hospital, Houston, TX, USA.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Ziegler</LastName><ForeName>David S</ForeName><Initials>DS</Initials><AffiliationInfo><Affiliation>Sydney Children's Hospital, Randwick, NSW, Australia.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Children's Cancer Institute, University of New South Wales, Kensington, Australia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Veldhuijzen van Zanten</LastName><ForeName>Sophie</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>VU University Medical Center, Amsterdam, The Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kramm</LastName><ForeName>Christof M</ForeName><Initials>CM</Initials><AffiliationInfo><Affiliation>University of Göttingen, Göttingen, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>van Vuurden</LastName><ForeName>Dannis G</ForeName><Initials>DG</Initials><AffiliationInfo><Affiliation>VU University Medical Center, Amsterdam, The Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Fouladi</LastName><ForeName>Maryam</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, USA. 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PubStatus="accepted"><Year>2017</Year><Month>01</Month><Day>03</Day></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2017</Year><Month>1</Month><Day>18</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2017</Year><Month>1</Month><Day>18</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2017</Year><Month>1</Month><Day>18</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>ppublish</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">28093680</ArticleId><ArticleId IdType="doi">10.1007/s11060-017-2372-5</ArticleId><ArticleId IdType="pii">10.1007/s11060-017-2372-5</ArticleId></ArticleIdList></PubmedData></pubmed></record>Pour manipuler ce document sous Unix (Dilib)
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