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Childhood Glaucoma Research Network Update: World Glaucoma Congress 2019 in Melbourne, Australia on March 27, 2019

Thank you to everyone who joined our meeting at the World Glaucoma Congress. We had over 50 attendees - majority being NEW. For those unable to attend, please see a full summary of the meeting below. We look forward to seeing you at future meetings.

In this email, you'll find information about:

Tip: Click the links below to be redirected to a specific topic in this email
  1. Robison D. Harley CGRN International Pediatric Glaucoma Registry
  2. Severity Staging System of Childhood Glaucoma
  3. Childhood Glaucoma Research Network Federated Registry
  4. Global Eye SITE®
  5. Publications - NEW
  6. Information for New Members
  7. Our Next Meeting
Add us to your address book to make sure you see our emails!

Our emails will come to you from Alana L. Grajewski, MD - Childhood Glaucoma Research Network at the email address jillmote@miami.edu

The CGRN is headquartered at The Samuel & Ethel Balkan International Pediatric Glaucoma Center at Bascom Palmer Eye Institute at the University of Miami. The CGRN is Directed by Alana L. Grajewski, MD and Marketing & Communications are managed by Jill Mote.

Find us at the next World Glaucoma Congress in Kyoto, Japan in 2021!

Robison D. Harley, MD CGRN International Pediatric Glaucoma Registry

We would like to invite your institution to participate in The Robinson Harley, M.D. CGRN International Pediatric Glaucoma Registry. The Registry is a unique international database that is configured by CGRN, hosted by Wills Eye Hospital, and maintained by Invitae. By participating, your institution will have the opportunity to both further enrich the project with your patient data while also having access to the global database. The Registry:

  • Is secure, confidential, de-identified database
  • Is populated by users worldwide with no cost to the user (currently 17 IRB approved centers with 21 new awaiting approval)
  • Leverages large amounts of data on a rare disease to be used for research purposes by users pending approval
Read the Latest Harley CGRN Registry Newsletter

Please contact Dr. Shaden Yassin at syassin@willseye.org or Dr. Alex Levin at alevin@willseye.org if you are interested in participating or have any questions.

SSSCG: Severity Staging System of Childhood Glaucoma

 
The CGRN's newest initiative is the Severity Staging System of Childhood Glaucoma. The purpose of this study is to calibrate and validate a proposed “Severity Staging System of Childhood Glaucoma “ (SSSCG) by conducting a retrospective review of medical records.
 
The multi-center, retrospective series will include modeling for predictors of poor visual acuity and IOP control outcomes - constructing a Severity Staging System in Childhood Glaucoma with half of the database entries. We will then validate the SSSCG using retrospective data, using the other half of the database.
 
You can contact Dr. Huda Sheheitli below or at hxs691@med.miami.edu  if you are interested in participating or have any questions.
Get Involved or Ask Questions
Learn More

CGRN Federated Registry


The CGRN would like to propose the idea of creating a Federated Registry for the Childhood Glaucoma Research Network to investigate pediatric glaucoma related research questions
Challenges of a Local Registry
  • IRB rules vary from place to place
  • Level of IT support varies from none to robust
  • Hand abstraction of pediatric data for a super-specialized subject like childhood glaucoma. Only want to touch historical records once and then update only subsequent follow-up data
What is a Federated Registry?
  • Multiple locally-hosted registries focused on a clinical problem; Agreed-upon data fields for the clinical problem, Harmonized handling of data across institutions, Data remains locally-controlled
  • Individual centers can choose whether or not to contribute to group analyses
Using REDCap Open-Source Registry
  • REDCap can be set up easily at each institution at low cost
  • Harmonized versions of a CGRN-specific database can be cloned at each institution
  • Encrypted, secure platform
  • Can export de-identified data

Federated Registry Advantages
  • Local control of data access - Meets local IRB, confidentiality requirements - Negotiate data-sharing agreements only when needed
  • Harmonized dataset - Data fields are standardized across institutions and practices
Do you like the idea of a CGRN Federated Registry? Are you involved in any other Federated Registries? Would you like to participate in a CGRN Federated Registry?

Let us know your thoughts by replying to this email or clicking the button above.
What Do You Think? Let Us Know

Global Eye SITE®


Global Eye Site® is our mission to increase the availability of pediatric glaucoma treatment and care, worldwide. The program's curriculum includes the workup and management of childhood glaucoma, ocular syndromes, and ocular genetics. Participants are given the opportunity to work with leading specialists in pediatric glaucoma, pediatric ophthalmology, and genetics from the University of Miami at The Samuel & Ethel Balkan International Pediatric Glaucoma Center.

The Process:
  1. Identify passionate anterior segment surgeons from an area of need from the USA and worldwide
  2. 2 week to 3 month observership at a Pediatric Glaucoma Center in the treatment and management of pediatric glaucoma
  3. We provide materials and resources for continued support as the physician returns home
  4. The surgeon now has the knowledge, experience, and equipment necessary to treat the patients of their region and train other surgeons in their area
  5. The physician returns home to provide care and train others to ultimately increase the availability of specialized care for children with glaucoma
Global Eye SITE® promotes a culture of continuous learning, ultimately increasing the availability of physicians in an area dedicated to saving the sight and changing the lives of children with glaucoma. This allows Global Eye SITE® to have a lasting and growing impact on reducing preventable blindness due to glaucoma worldwide.
Since 2017, The Global Eye Site® has trained surgeons from Brazil, Suriname, Israel, Ghana, and the Midwestern United States. Upcoming scholars will be from Mexico, Turkey, China, and the South East United States.
 We will be sending out a separate communication with more detail on the Global Eye SITE® program, how it works, and how to apply for an observership. 

We wrote a blog post for The International Agency for the Prevention of Blindness for World Glaucoma Week.

Read It Now

CGRN Publications

NEW! The Surgical Management of Childhood Glaucoma, Clinical Considerations and Techniques

Editors: Alana L. Grajewski, Elena Bitrian, Maria Papadopoulos, Sharon F. Freedman

Practical and illustrative guide for ophthalmologists - Dozens of surgical videos and color illustrations and intraoperative pictures - Surgical techniques from angle surgery to trabeculectomy, glaucoma drainage devices or cycloablation procedures - Guides the reader step-by-step along the surgical procedures
Purchase The Surgical Management of Childhood Glaucoma
World Glaucoma Association Consensus Series - 9: Childhood Glaucoma

Edited by: R.N. Weinreb & A.L. Grajewski & M. Papadopoulos & J. Grigg & S. Freedman

Childhood Glaucoma was the topic of the World Glaucoma Association's Ninth Consensus. The goal of this consensus was to provide a foundation for diagnosing and treating childhood glaucoma and how it can be best done in clinical practice. 

Soon to be available in Spanish and Chinese.
Purchase the Childhood Glaucoma Consensus Book
World Glaucoma Association Consensus Series - 9: Childhood Glaucoma Compendium

The purpose of this spiral bound publication is to collect in a visual and practical format useful content from the Consensus Series 9 book. Perfect for the clinic and a great quick reference.

Purchase the Childhood Glaucoma Consensus Compendium
World Glaucoma Association Consensus Series - 9: Glaucoma Infantil un Compendio

edited by: A.L. Grajewski & E. Bitrian & R.N. Weinreb & M. Papadopoulos & J. Grigg & S. Freedmantranslated by: S. Sánchez Di Martino

The compendium translated into Spanish.

Purchase the Glaucoma Infantil un Compendio

Membership Information

Those with an interest in the treatment, management, and research of childhood glaucoma are welcome to become a member of the Childhood Glaucoma Research Network. We are an association of over 210+ clinicians and scientists in over 40 countries.

Please fill out the form in the link above and you will be automatically added into the Network. Membership is free and open to those with all levels of experience and those still in training. 


Please share this email with anyone who may be interested in becoming involved with the CGRN. 
CLICK HERE TO JOIN THE CGRN
Our next meeting will be held during the American Academy of Ophthalmology Annual Meeting (AAO 2019) in San Francisco in October 2019.

Meeting details and room location TBA.
Copyright © 2019 Childhood Glaucoma Research Network, All rights reserved.


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