Development of a Biobank for Rare Pediatric Eye Cancers
Abstract
Objective and Rationale: Pediatric eye tumors are rare cancers that arise in children and affect the structures in and around the eye. They represent a significant threat to life if not diagnosed and treated in a timely fashion. Since they affect the eye, they can also result in blindness or severe visual impairment, causing great stress on affected children and families, and negatively impacting quality of life. Rare cancers are notoriously difficult to study, because large numbers of patients (and their specimens and data) are required to yield reliable scientific results. There are over 30 different kinds of eye tumors, but it is hard to collect large numbers of each kind. Large collections are needed in order to learn with certainty things like: how to best detect each cancer type; what causes them; how they develop and progress; what might prevent them; and what therapies are most effective. There is a need for a centralized resource that houses a large collection of specimens and data from a wide variety of patients with eye cancer so that important research studies can be conducted. We propose to fill this need by developing a biobank for rare childhood eye cancers. A biobank is a collection of tissue specimens (e.g., blood, tumors) and clinical data (e.g., diagnosis details, demographic information, images) that is made available to researchers for subsequent scientific study. We will develop our biobank with partners in Canada, the United States, and United Kingdom to: recruit a large number of patients and collect a wide variety of specimens and associated data and clinical images; adhere to international standards and best practices to preserve specimen and data quality; generate additional data and resources from collected specimens; and incorporate patient lived experience into biobank governance and operations, such that research supported by the biobank maintains a patient-centered focus. Applicability: Biobanks have been shown to result in important research discoveries that impact patient care and improve patient outcomes. Our project will develop the first and only biobank dedicated to childhood eye cancer anywhere in the world. It is expected to collect specimens and data from over 200 patients per year, inspiring much needed collaboration and discovery in the field. This way, individual patients seen at clinics around the world will not be dismissed as single cases impossible to study with certainty, but instead, over time, will become part of a growing collection of similar cases, facilitating research and discoveries that were previously not possible. Advancing Rare Cancer Research: This project will advance rare pediatric eye cancer research by inspiring a wide variety of research into cancer diagnosis, development, prevention, and treatment. As the proposed biobank will collect specimens, clinical data, and clinical images, the biobank will support many research modalities that use novel technologies in basic science, machine learning, and data science. Additional resources, such as cancer models and genome datasets, will be generated using specimens collected in the biobank and shared with the research community. Furthermore, the biobank will promote collaboration between patients, researchers, and clinicians, advancing patient involvement as partners in research, and inspiring research that aims for patient benefit as its main goal. Community Roles: Stakeholders of the rare pediatric eye cancer community to be involved in this biobank include patients, clinicians, and researchers – each with key roles in this project. Clinicians will bridge connections to their patient populations and collect and contribute specimens and data. Patient advocates will ensure biobank practices are patient-friendly and help communicate research results to participants. Established clinical, research, and patient leaders in the community will endorse the biobank to ensure continued patien
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 28, 2022
- Source ID
- W81XWH2210535
Entities
People
- Helen Dimaras
Organizations
- Hospital for Sick Children
- United States Army