| Title |
The international diffuse intrinsic pontine glioma registry: an infrastructure to accelerate collaborative research for an orphan disease
|
|---|---|
| Published in |
Journal of Neuro-Oncology, January 2017
|
| DOI | 10.1007/s11060-017-2372-5 |
| Pubmed ID | |
| Authors |
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 Fouladi |
| 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. |
X Demographics
The data shown below were collected from the profiles of 17 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 5 | 29% |
| United Kingdom | 3 | 18% |
| Australia | 1 | 6% |
| Germany | 1 | 6% |
| Unknown | 7 | 41% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 14 | 82% |
| Scientists | 2 | 12% |
| Science communicators (journalists, bloggers, editors) | 1 | 6% |
Mendeley readers
The data shown below were compiled from readership statistics for 56 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 56 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 9 | 16% |
| Student > Master | 6 | 11% |
| Other | 5 | 9% |
| Student > Bachelor | 5 | 9% |
| Student > Ph. D. Student | 4 | 7% |
| Other | 15 | 27% |
| Unknown | 12 | 21% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 21 | 38% |
| Neuroscience | 4 | 7% |
| Biochemistry, Genetics and Molecular Biology | 3 | 5% |
| Engineering | 3 | 5% |
| Agricultural and Biological Sciences | 2 | 4% |
| Other | 7 | 13% |
| Unknown | 16 | 29% |
Attention Score in Context
This research output has an Altmetric Attention Score of 13. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 28 June 2019.
All research outputs
#2,819,946
of 25,466,764 outputs
Outputs from Journal of Neuro-Oncology
#185
of 3,263 outputs
Outputs of similar age
#55,017
of 422,793 outputs
Outputs of similar age from Journal of Neuro-Oncology
#3
of 21 outputs
Altmetric has tracked 25,466,764 research outputs across all sources so far. Compared to these this one has done well and is in the 88th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 3,263 research outputs from this source. They receive a mean Attention Score of 4.4. This one has done particularly well, scoring higher than 94% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 422,793 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 86% of its contemporaries.
We're also able to compare this research output to 21 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 85% of its contemporaries.