GLIA-CTN
TRAINING MATERIALS

The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) has developed a basic set of guidelines and conventions to standardize data collection, abstraction, and entry across sites and projects, and we invite you to spend some time familiarizing yourself with the training materials and video tutorials on this page.

Clicking on the image to your left will allow you to download the most recent version of the GLIA-CTN Manual of Operations, which serves as a central reference point for all individuals - investigators, coordinators, technicians, etc. - at institutions participating under an active IRB Reliance Agreement. The handbook addresses key topics such as recruitment, enrollment, data collection/entry, participant follow-up, etc.

Also included below are a series of tutorial videos specific to the GLIA-CTN Biorepository Database, which serves as the central data warehouse for individuals enrolled across the network. These videos will walk you through the steps of completing each “instrument” in the database, including Demographics, Diagnosis, Informed Consent, Health Records, and Molecular Confirmation.

Mock Consent Conversation

The recording below is intended to represent a typical “Consent Interview” with a prospective study participant. This discussion is a required part of the enrollment process, and serves as an opportunity to clarify various sections of the consent form and give prospective participants (and their families) an opportunity to ask questions. Please be sure to reference the most recently approved version of your site-specific consent form when conducting a Consent Interview with a prospective participant.

Topic I - GLIA-CTN Administrative Portal

Topic II - GLIA-CTN Biorepository Database

Note: Please be sure to download and reference the file naming conventions established for source documents uploaded to the biorepository database. Thank you.

In addition to including research subjects directly as part of its central study protocol, the GLIA-CTN is working with collaborators worldwide to enroll research participants under local research protocols and contribute redacted data to a central disease-specific database, known as the GLIA-CTN Natural History Project. We invite all collaborators working on this project to review the tutorial videos below for information around entering data into the various forms available.

Please be sure to download and reference the file naming conventions established for the database.

Topic III - GLIA-CTN Natural History Project Database

Questions?

If you were unable to locate a specific resource here, please feel free to contact either Omar Sherbini (GLIA-CTN Program Manager) at sherbinio@email.chop.edu or Julia Kramer- Golinkoff (GLIA-CTN Communications and Advocacy Liaison) at kramergolj@email.chop.edu. We are available to assist with all questions.