Government plans to set up national registry for women with gynaec disorders
NEW DELHI: India plans to set up a national registry for women with endometriosis, a major gynaecological condition affecting women of reproductive age, to systematically collect data on prevalence, symptoms, comorbidities, and treatment.
This will enhance research efforts, improve diagnosis and care, and support a data-driven approach to developing targeted policies and interventions for better disease management, said Dr Rahul Gajbhiye, Scientist E at the Indian Council of Medical Research-National Institute for Research in Reproductive and Child Health (ICMR-NIRRCH), Mumbai.
“At NIRRCH, we plan to establish a national registry for women with endometriosis to systematically collect data on prevalence, symptoms, comorbidities, and treatment outcomes using a life-course epidemiology approach,” Dr Gajbhiye, who is also Head of the Clinical Research Laboratory, told this paper.
The idea is also to generate credible national data that can then be compared and expanded to other Asian countries for addressing common risk factors. Like Australia and France, a national action plan is crucial to improving awareness, diagnosis, treatment, and research and ensuring better healthcare access and support for affected individuals, said Dr Gajbhiye, who has been leading endometriosis research in India for the past two decades.
A new study published in The Lancet Regional Health-Southeast Asia has outlined research priorities for Endometriosis and Adenomyosis, two debilitating gynaecological conditions affecting millions of women worldwide. It emphasised the need for collaborative efforts between India and Sri Lanka – where a research workshop was organised last year in this direction - and throughout Southeast Asia to improve diagnosis, treatment, and healthcare access.
According to the lead author of the article, Hrishikesh Munshi, Scientist C at ICMR-NIRRCH, the country’s key priorities include integrating endometriosis education in schools, establishing multidisciplinary care centres, expanding gynaecological laparoscopic services, and prioritising research with dedicated funding and a national task force. “Multidisciplinary centres will ensure comprehensive care, early diagnosis, and personalised treatment while improving access and aligning with global best practices,” he said.
Dr. Gajbhiye said NIRRCH, the premier ICMR institute that is working to improve women’s health, can play a pivotal role in advancing endometriosis research in South Asia by supporting clinicians and researchers through capacity building, standardised data collection, data analysis training, and assistance in basic, clinical, and public health research.
Emphasising that increasing awareness among girls, women, and healthcare providers is crucial for early recognition and management of endometriosis in India, he said that multidisciplinary care centres should be established in both the public and private sectors, to ensure accessible treatment, especially in rural areas.
“Training general practitioners on symptom identification and referral pathways is essential to reduce delayed diagnosis and misdiagnosis. Endometriosis, now recognised as a chronic systemic disease, requires dedicated research funding for early non-invasive diagnosis and new treatments.”
“Addressing stigma through community education and developing national guidelines will standardise care, improve early intervention, and provide evidence-based treatment recommendations at all healthcare levels,” said Dr Gajbhiye, whose national study on endometriosis, funded by DBT Wellcome, an independent, public charity that funds research in health and biomedical sciences in India, found an average diagnostic delay of 5.9 years, with central India experiencing the longest (9.4 years).
His team has developed an educational brochure in multiple languages to raise awareness and has hosted Endometriosis Awareness Month events across India under Endometriosis Clinical and Genetic Research in India, in which they educate both healthcare providers and the general public.
He added that professional bodies such as Federation of Obstetric and Gynaecological Societies of India (FOGSI) and the Endometriosis Society of India are also involved in addressing the burden of endometriosis in India.