Emphasizing Patient-Centricity Through a Tailored Training Program to Empower Patients, Advocates, and Ethics Committees in Good Clinical Practice.

Objectives: Good Clinical Practices (GCP) are essential for patient-centric research. The standard bioethics and GCP training emphasizing a "one-size-fits-all" approach may not adequately equip ethics committee members, especially the lay and social scientist members, towards their critical role in reviewing clinical trials and related documentation. This article explores a patient-centered, patient advocates-driven training program focused on raising awareness about research ethics and GCP among patients, advocates and ethics committee members.

Patient Advocates for Clinical Research (PACER): A Step Toward Ethical, Relevant, and Truly Participatory Clinical Research in India.

Background Clinical research presents a promising path for improving healthcare in contemporary India. Yet, researchers identify gaps in trust, awareness, as well as misconceptions about being a '"guinea pig." We proposed building the capacity of training patient advocacy groups (PAGs) in patient-centered clinical research and through them creating aware patients as research partners.

Sex Bias in Treatment Abandonment of Childhood Cancer in India.

Objectives: To explore the magnitude of sex bias and determinants of treatment abandonment (TA) in childhood cancer in India.

Methods: Individual data of children (0-19 y) registered between January 1, 2017 and July 31, 2022, was compiled. TA was defined as defaulting curative intent treatment ≥4 wk.

Impact of COVID-19 nationwide lockdown on retinoblastoma treatment and outcome: A study of 476 eyes of 326 children.

Purpose: The novel coronavirus SARS-CoV-2 (COVID-19) and the resultant nationwide lockdown and travel restrictions led to difficulty in providing timely and regular treatment to patients with childhood cancers such as retinoblastoma. This study is aimed at assessing the demography, clinical presentation, treatment strategies, and outcome of treatment defaulters due to the lockdown.

Methods: Cross-sectional, observational study of retinoblastoma patients at a tertiary care ocular oncology center during the first wave of COVID-19 and the resulting nationwide lockdown.

Shared care for children with cancer in India through social and healthcare partnerships during the COVID-19 pandemic.

Background: The COVID pandemic posed a challenge for the tertiary centers to continue treatment. Some tertiary centers were designated as COVID-only hospitals, making it difficult for existing childhood cancer patients to continue their treatment at those centres. The need for shared care in childhood cancer was perceived by Cankids and its partnering childhood cancer-treating centers in North and East India.

Estimated National and State Level Incidence of Childhood and Adolescent Cancer in India.

Background: Hitherto, incidence burden of childhood cancer in India has been derived from GLOBOCAN data. Recent analyses have challenged whether this accurately measures the true incidence of childhood cancer.

Objective: To use observed data rather than simulation to estimate the number of children (0-14 years), as well as number of children and adolescents (0-19 years), in India who develop cancer every year at the national and state/union territory (UT) level.

Pilot initiative in India to explore the gonadal function and fertility outcomes of a cohort of childhood cancer survivors.

Context: Steady improvement in childhood cancer outcomes has led to a growing number of survivors, many of who develop long-term sequelae. There is limited data about these sequelae (including those related to fertility) on childhood cancer survivors from India.

Aims: We undertook a prospective pilot study on childhood cancer survivors from India to assess their gonadal function and fertility.