2 - Network organisation and process
Quality
Management |
Training and
Education |
Public
Involvement |
Description | ||
---|---|---|
Name |
MICYRN - Maternal Infant Child and Youth Research Network |
|
Existence of an identified contact person for external enquiries | Yes | Christine Oriel, Network Coordinator; Barb Storey, Director of Operations |
Existence of an internal steering committee | Yes | as a sta ding alone non for profit incorporated organization, MICYRN has a Board that oversees the activities and provide guidance to the Scientific Director and the Director of Operations |
Existence of an external advisory steering committee directing the reporting party | No | however, RareKids-Can has its own Executive committee and External Advisory Board |
Existence of a website | Yes | www.micyrn.ca www.rarekidscan.com |
Existence of newsletter | Yes | for both MICYRN and RareKids-CAN |
Existence of internal databases for disease, condition treatment and/or outcome | No | MICYRN and RareKids_CAN rely on Clinical Trial Navigators based at each institution to identify investigators interested in participating to a particular clinical trial, targeting a disease or a condition. MICYRN provides support to sponsor for site and investigator identification through a service level agreement. |
Provisions to ascertain data protection and data security | Yes | MICYRN has a collaborating agreement with the Data Coordinating Center at the Women and Children Health Research Institute (WCHRI) based at the University of Alberta. WCHRI is the data coordinating centre of all trials supported by RareKids-Can and most trials supported by MICYRN (those that are not Rare Disease trials). WCHRI use a validated instance of REDCap that has been proved to be compliant with Health Canada regulation (https://www.wchri.org/members-and-trainees/research-platforms/redcap/ and https://help.redcap.ualberta.ca/). |
Procedures to access the database by third parties | No | |
Access to external databases/registries | No | |
Standardised process to access an external database | No |