Chairs

Goal Statement

To increase the utilization of protocols and the percentage of children on trials.

Key Focus Areas

• Developing and delivering training and research content for patients, caregivers, CRCs, and research staff to enhance cancer registry management and patient engagement.
• To do the Childhood Cancer Research Priority Setting Exercise (PSE) by a collaborative effort to identify research priorities and develop protocols for childhood cancer research.
• Creation of a Clinical Trial Unit dedicated to Childhood Cancer with Human and Other Resources.

Glimpses of Work

(a) To develop and deliver training and research content for patients, caregivers, CRCs, and research staff

Context

Creating and sharing research content for patients and caregivers gives them useful information about their condition and treatment choices. This helps them make decisions about their care, get involved in it better, and even join in research projects.

Purpose

A research training resource document is created for a. Frontline Research Staff b. For Parents, Carers and Public c. For Researchers and Clinical Investigators. This document includes free and paid training and will be uploaded in a separate training tab on the ICCI website.

Status/Next Steps

Link for training module for researchers has been created. It will soon be uploaded onto the ICCI website.

(b) To do the Childhood Cancer Research Priority Setting Exercise (PSE)

Context

The purpose of the Childhood Cancer Research Priority Setting Exercise (PSE) is to involve various stakeholders such as patients, families, caregivers, clinicians, and advocacy groups in a collaborative effort to identify research priorities and develop protocols for childhood cancer research.

Purpose

We have developed a detailed plan for the prioritized research initiatives. We will start by creating a survey and inviting people to participate online. After sorting responses, we reviewed the evidence. Then, we held a workshop to rank the survey items. Using the workshop feedback, we can compile the top ten priorities for childhood cancer research in India.

Status/Next Steps

To identify and prioritize gaps and unresolved questions in pediatric oncology research through patients’ voices. This includes forming research teams, securing funding, and drafting concept notes/proposals for this exercise.