Boston-London-Toronto Rare Cerebrovascular Disease Consortium

  • Research type

    Research Study

  • Full title

    Boston-London-Toronto Rare Cerebrovascular Disease Consortium

  • IRAS ID

    322266

  • Contact name

    Greg James

  • Contact email

    greg.james@ucl.ac.uk

  • Sponsor organisation

    Boston Children's Hospital

  • Duration of Study in the UK

    10 years, 0 months, 1 days

  • Research summary

    We aim to create a consortium between the Boston Children's Hospital, SickKids Hospital of Toronto, and Great Ormond Street Hospital of London. The purpose of this consortium is to collect data on children presenting with cerebrovascular diseases that are rare. Since these diseases are rare, individual institutions will
    not encounter significant numbers of patients over time to fully understand the determinants of a favorable or unfavorable prognosis. By using a software called ChRIS, these institutions will upload de-identified medical records and images to share with each other. The research teams at the institutions will then use this dataset to try and determine better treatment options for patients, by searching for trends within the greater dataset. The dataset, through ChRIS, will be housed under BCH, and therefore BCH will be the main site. In an effort to not limit the dataset, this consortium will be open to other institutions with patients that meet inclusion criteria. In the event that another institution would like to contribute to the consortium, we will submit an amendment to add the site and execute a DUA and/or MTA. Additionally, Boston Children's Hospital will be accepting samples from outside institutions. This will allow Boston Children's to be a central lab for the institutions to send clinically interesting samples (blood, urine, brain tissue, bone, stool...etc) to be analyzed.

  • REC name

    West of Scotland REC 5

  • REC reference

    25/WS/0065

  • Date of REC Opinion

    3 Jul 2025

  • REC opinion

    Further Information Favourable Opinion