DIPG DMG Registry

DIPG DMG Registry Working together to find a cure for DIPG. The goal of this effort is to support innovative research and ultimately find a cure for DIPG.

The International Diffuse Intrinsic Pontine Glioma (DIPG) Registry is a collaborative effort by physicians and researchers from North America, Europe, and Australia to centralize and standardize the collection of clinical data and tumor samples from DIPG patients.

We would like to congratulate Dr. Craig Erker on his recent publication with the IDIPGR, Characteristics of Patients ≥ 1...
06/14/2021

We would like to congratulate Dr. Craig Erker on his recent publication with the IDIPGR, Characteristics of Patients ≥ 10 Years of Age with Diffuse Intrinsic Pontine Glioma: A Report from the International DIPG Registry, in Neuro-Oncology! Take a look below!

AbstractBackground. DIPG generally occurs in young school-age children, although can occur in adolescents and young adults. The purpose of this study was to des

We would like to share this posting on behalf of our colleagues at The Hospital for Sick Children: Connie Guglietti Clin...
05/18/2021

We would like to share this posting on behalf of our colleagues at The Hospital for Sick Children:

Connie Guglietti Clinical-trials Research Fellowship in DMG/Paediatric Neuro-Oncology at
The Hospital for Sick Children

The Neuro-Oncology program at SickKids is excited to offer a unique research fellowship focusing on clinical trial design, writing and ex*****on in diffuse midline gliomas (DMG) and childhood brain tumors.
This 1-2-year fellowship will provide the successful candidate with an opportunity to train and impact novel conceptual clinical trials in pediatric Neuro-Oncology.
SickKids is one of the largest, most world renowned paediatric brain tumour programs (www.sickkids.ca/haematologyoncology/index.html). The affiliated paediatric brain tumour research centre (www.sickkids.ca/Research/BTRC/) provides a unique opportunity to achieve these goals.
The Brain Tumour Research Centre is staffed by oncologist-scientists, surgeon-scientists, pathologist-scientists and psychologist-scientists who conduct leading edge investigations in translational pediatric oncology including experimental therapeutics. The Paediatric Brain Tumour Program and the Brain Tumour Research Centre (BTRC) have trained multiple consultants who now hold leadership positions in prestigious institutes in Europe, South America, Asia, and the Middle East. Our group has translated multiple discoveries into clinical trials and new standards in the treatment of children with brain tumours.
The Guglietti fellowship is specifically focused on DMG and other deadly recurrent/progressive brain tumors in children.
The successful candidate will:
• Innovate, conceptualize, draft, and implement clinical trial protocols for diffuse midline glioma (DMG) and other childhood brain tumours.
• Provide project management.
• Disseminate research and clinical findings through publications, presentations, and seminars.
• Participate in all Neuro-Oncology program activities such as multidisciplinary rounds, interdisciplinary rounds, tumour board rounds, neuroradiology rounds etc.
• Experience and participation in basic/translational research are also available as part of the fellowship.

Eligibility
• Applicants must have time commitment for the 1-2 years of the fellowship.
• Applicants may be Canadian or international citizens.

Experience/ Skills
• Clinical experience in management of childhood brain tumours.
• Experience in clinical trials is an asset.
• Basic and translational knowledge are an asset.
• Motivation and the ability to work independently.
• Strong communications skills.

Application Process
• Submission deadline is July 15, 2021 for fellowship START DATE July 1, 2022

Education Program Coordinator
Division of Haematology/Oncology, Department of Paediatrics
The Hospital for Sick Children
555 University Ave | Toronto, ON, M5G 1X8
E-mail: [email protected]

By determining how brain tumours form, the Labatt Brain Tumour Research Centre (BTRC) is progressing towards more predictable clinical control of the condition.

The International DIPG/DMG Registry would like to congratulate the following researchers who's abstracts were accepted a...
01/26/2021

The International DIPG/DMG Registry would like to congratulate the following researchers who's abstracts were accepted and presented at ISPNO 2020! The IDIPGR team was happy to support you on these projects.

[EPI-P-10]The International Diffuse Intrinsic Pontine Glioma (DIPG)/Diffuse Midline Glioma (DMG) Registry and Repository (IDIPGR) expansion
Presenter: Mariko DeWire (USA)

[DIPC-P-17]Patterns of cerebrospinal fluid diversion and survival in children with diffuse intrinsic pontine glioma: a report from the International DIPG Registry
Presenter: Tabitha Cooney (USA)

[DIPC-P-08]Re-irradiation of DIPG: Data from the International DIPG Registry
Presenter: Doug Strother (Canada)

[DIPC-P-06]Non-DIPG patients enrolled in the International DIPG Registry: Histopathologic evaluation of central neuro-imaging review
Presenter: Margot Lazow (USA)

The International DIPG/DMG Registry would like to congratulate Dr. Rachid Drissi and team on their newly published paper...
01/20/2021

The International DIPG/DMG Registry would like to congratulate Dr. Rachid Drissi and team on their newly published paper; A pilot radiogenomic study of DIPG reveals distinct subgroups with unique clinical trajectories and therapeutic targets.

An adequate understanding of the relationships between radiographic and genomic features in diffuse intrinsic pontine glioma (DIPG) is essential, especially in the absence of universal biopsy, to further characterize the molecular heterogeneity of this disease and determine which patients are most l...

The International DIPG/DMG Registry would like to congratulate Dr. James Leach for his paper recently published in Neuro...
12/29/2020

The International DIPG/DMG Registry would like to congratulate Dr. James Leach for his paper recently published in Neuro-Oncology, MR imaging features of diffuse intrinsic pontine glioma and relationship to overall survival: report from the International DIPG Registry.

Baseline imaging features are assessed in the IDIPGR. There was a 9.5% discordance in DIPG diagnosis between local and central review, demonstrating need for central imaging confirmation for prospective trials. Although several imaging features were significantly associated with OS (univariable), on...

Posting on behalf of our colleagues at Sick Kids!Connie Guglietti Clinical Research Fellowship in DIPG/Paediatric Neuro-...
07/29/2020

Posting on behalf of our colleagues at Sick Kids!

Connie Guglietti Clinical Research Fellowship in DIPG/Paediatric Neuro-Oncology at
The Hospital for Sick Children

This 1-2 year fellowship will provide the successful candidate with an opportunity to train in one of the largest, most world renowned paediatric brain tumour programs (www.sickkids.ca/haematologyoncology/index.html) and affiliated paediatric brain tumour research centres in the world (www.sickkids.ca/Research/BTRC/).
The Brain Tumour Research Centre is staffed by oncologist-scientists, surgeon-scientists, pathologist-scientists and psychologist-scientists who conduct leading edge investigations in translational pediatric oncology including experimental therapeutics. The Paediatric Brain Tumour Program and the Brain Tumour Research Centre (BTRC) have trained multiple consultants who now hold leadership positions in prestigious institutes in Europe, South America, Asia and the Middle East.
The successful candidate will
• Innovate, conceptualize, draft and implement clinical trial protocols for diffuse intrinsic pontine glioma (DIPG).
• Apply for research ethics board approvals.
• Disseminate research and clinical findings through publications, presentations, and seminars.
• Participate in all neuro-oncology program activities such as multidisciplinary rounds, interdisciplinary rounds, tumour board rounds, neuro-radiology rounds etc
• Experience and participation in basic/translational research is also available as part of the fellowship.

Eligibility
• Applicants should be certified or board-eligible in Paediatric Hematology/Oncology.
• Applicants may be Canadian or international citizens.

Experience/ Skills
• Epidemiology experience is an asset.
• Motivation and the ability to work independently are required
• Strong communications skills are a must

Application Process
• Submission deadline is August 17, 2020 for fellowship START DATE July 1, 2021

Education Program Coordinator
Division of Haematology/Oncology, Department of Paediatrics
The Hospital for Sick Children
555 University Ave | Toronto, ON, M5G 1X8
E-mail: [email protected]

Haematology/Oncology

The International DIPG/DMG Registry would like to congratulate Dr. Craig Erker for his recent paper published in Lancet ...
07/13/2020

The International DIPG/DMG Registry would like to congratulate Dr. Craig Erker for his recent paper published in Lancet Oncology: Response Assessment in Paediatric High-Grade Glioma: Recommendations From the Response Assessment in Pediatric Neuro-Oncology (RAPNO) Working Group (see Summary in comments!)

We are excited to feature Dr. Erker in the following Research Spotilight.

Name/Title: Craig Erker, MD, MS – Neuro-Oncologist
IWK Health Centre and Dalhousie University

1. Where are you from?/Where did you study? I am from Canada, specifically a small town in the province of Saskatchewan. I began my studies in Saskatchewan then completed my medical degree at Saba University School of Medicine. I was fortunate to travel during medical training and am currently in Halifax, Nova Scotia, a beautiful and culturally rich area of Canada.

2. What are you researching right now? I have been working with a wonderful team to develop response assessment criteria for pediatric high-grade gliomas. I am also working with the DIPG registry team to assess and describe a large cohort of patients older than 10 years of age with DIPG.

3. Who is your all-time favorite scientist and why? Nicolaus Copernicus demonstrated heliocentrism despite disbelief and extreme controversy his scientific assessment persevered.

4. What do you like to do in your spare time? Jog, go for walks with my kids, and spend time with my spouse.

5. Favorite food? Sweet and sour meatballs and spaghetti

6. Why science? Science forces you to grow intellectually and in how you handle responsibility. You can gain a large amount of humility. Finally, the challenges facing us today may help countless people in the future.

7. Who/What has inspired you to work on DIPG? The initial push came from the team in Cincinnati during my fellowship, but my heart was set when I treated a young child with DIPG the same age as my 2-year old son.

8. What are you reading right now? Breaking bad news by Robert Buckman

9. If you could give one piece of advice to someone considering a research career, what would it be? Be a team player, take some calculated risks, and be humble as your career grows and develops.

The DIPG/DMG Registry would like to congratulate Dr. Tab Cooney on her recent paper published in Lancet Oncology; Respon...
06/29/2020

The DIPG/DMG Registry would like to congratulate Dr. Tab Cooney on her recent paper published in Lancet Oncology; Response Assessment in Diffuse Intrinsic Pontine Glioma: Recommendations From the Response Assessment in Pediatric Neuro-Oncology (RAPNO) Working Group. (see Summary in comments!)

We would like to highlight Dr. Cooney in this Research Spotlight:

Name/Title: Tab Cooney, MD, Pediatric Neuro-Oncologist at Dana Farber/Boston Children’s Cancer and Blood Disorders Center

Where are you from?/Where did you study? I was born in Philadelphia, grew up and attended school along the mid-Atlantic and Southeast United States.

What are you researching right now? Through the International DIPG registry, we are studying the patterns of CSF diversion amongst DIPG patients and their effects on survival.

Who is your all-time favorite scientist and why? My all-time favorite will be the scientist who cures DIPG, whomever she may be.

What do you like to do in your spare time? Exercise (yoga, running, basketball), eat delicious food, visit art museums, engage in my community, and whatever my elderly shih-tzu tells me to do.

Favorite food? Currently any whole fish I’ve eaten in Boston.

Why science? I can’t think of a greater honor than pursuing knowledge as a means to improve humanity.

Who/What has inspired you to work on DIPG? Kathy Warren, Michelle Monje, and every past, current and future DIPG patient in my life.

What are you reading right now? Re-reading ‘Between the World and Me’ by Ta-Nehisi Coates.

If you could give one piece of advice to someone considering a research career, what would it be? If you are as fortunate as me to follow your passion, may you move through life with gratitude, empathy and kindness.

https://doi.org/10.1016/S1470-2045(20)30166-2d

THANK YOU!!! Thank you DIPG Collaborative!!! We are so appreciative of your support over the past 8 years. We are excite...
05/05/2020

THANK YOU!!! Thank you DIPG Collaborative!!! We are so appreciative of your support over the past 8 years. We are excited to receive this grant award and to continue the mission of the DIPG/DMG Registry. We are deeply honored!

Representatives from The Cure Starts Now and the DIPG Collaborative surprise Children's Hospital with $862,671 in funding for their research on the DIPG Regi...

The International DIPG/DMG Registry is featured in this wonderful article published in the Spring Issue of Cancer Today....
04/01/2020

The International DIPG/DMG Registry is featured in this wonderful article published in the Spring Issue of Cancer Today. This feature shows two moms' DIPG journeys and how their grassroots efforts and larger initiatives, such as the DIPG Registry, are helping families donate tumor tissue to advance brain cancer research. Have a look!

Two mothers, each with a son who died of brain cancer, worked together to increase awareness and acceptance of tumor tissue donation.

03/16/2020

In the midst of the COVID-19 restrictions, the IDIPGR Operations Team will still be providing support to our patients, families, sites, physicians, and researchers. During this time the quickest way to get in touch with a DIPG/DMG Registry team member will be through our email address, [email protected]. While we do not anticipate any significant delays in our response, we will be checking our phone lines (1-877-349-8074) remotely in regular intervals, so we appreciate your patience. We look forward to continuing to support the DIPG/DMG community during this unprecedented time.

Address

240 Albert Sabin Way MLC: 7018
Cincinnati, OH
45229

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