AIIMS Retinoblastoma Screening Project Kicks Off In Four Districts Across India

A new community-based initiative to detect retinoblastoma, a rare but potentially fatal eye cancer in children, is set to begin in four pilot districts across India—one each in Uttar Pradesh, Bihar, Odisha, and Haryana.

The programme, launched by AIIMS, Delhi, in collaboration with the Indian Council of Medical Research (ICMR), aims to identify early warning signs of the disease at the community level and ensure that children are referred quickly for treatment.

The initiative will work through local healthcare systems, including community health centres, primary health centres (PHCs), and frontline health workers, said Dr. Bhavna Chawla, Professor of Ophthalmology at AIIMS, Delhi. She emphasised that strengthening early detection at the grassroots level can dramatically improve survival and treatment outcomes for affected children.

According to her, early diagnosis is critical because the disease is highly treatable if identified in time. India has the highest number of retinoblastoma (Rb) cases in the world, with approximately 1,500 to 2,000 new cases of this eye cancer in children diagnosed annually. It is the most common childhood eye cancer, usually appearing in children from birth to three years of age.

“Retinoblastoma needs to be identified early at the community level. This is very important because retinoblastoma is a 100% curable cancer if detected in time,” Dr. Chawla said. “The children who are currently coming to us are receiving effective treatment.”

Retinoblastoma develops in the retina, the light-sensitive tissue at the back of the eye, and usually affects children under five years of age. While advances in treatment have greatly improved survival rates, delays in diagnosis remain a major challenge, particularly in rural and underserved areas.

Dr. Chawla explained that the focus of treatment today extends beyond saving a child’s life. “Now the goal is not only to save life—since it is a malignant cancer—but also to save the eye, and sometimes even preserve vision if the child reaches us at an early stage,” she said.

However, ensuring that children reach specialised centres early remains a significant challenge. Many parents are unaware of the symptoms or may not recognise them as signs of a serious disease. As a result, children often arrive at tertiary hospitals when the cancer has already progressed.

“To ensure early diagnosis, we have to work within the community itself,” Dr. Chawla said.

One of the most important early warning signs is a white reflex or white glow in the eye, medically known as leukocoria. Parents may notice this unusual white reflection in photographs taken with a flash or in certain lighting conditions.

“This white reflex is not only a sign of retinoblastoma but can also indicate several other childhood eye diseases that may lead to blindness,” Dr. Chawla noted. “If parents notice such a sign, they should immediately seek medical advice.”

The initiative aims to detect such warning signs through the existing public healthcare network. Community health centres, primary health centres (PHCs), and frontline health workers will play a key role in identifying potential cases.

“Our goal is to detect such children through the existing healthcare system—community health centres, PHCs, and even ASHA workers,” Dr. Chawla said. “We want to sensitise them because many people are not even aware that this condition exists. They also do not know where to go or whether treatment is available.”

Training and awareness are therefore central components of the programme. Healthcare workers will be trained to recognise early symptoms and refer children quickly to higher centres where specialised treatment is available.

“A clear referral pathway is essential,” Dr. Chawla emphasised. “Not everyone can reach AIIMS immediately, so the referral system should begin from local health facilities and gradually guide the child to the appropriate treatment centre.”

“Once a child is identified, families must be properly guided about where treatment is possible and what kind of treatment is available,” Dr. Chawla said. “We hope that through this initiative we can create greater awareness and detect more cases early.”

Beyond screening and treatment, long-term awareness about childhood eye diseases is also essential. Education, particularly among women and mothers, plays a vital role in early recognition of health problems in children.