The Indian Rare
Disease Registry




Towards addressing the unmet needs of patients
with Rare Diseases



Helping the country develop data, information to support
research & development and enhance innovation



Helping the country develop data, information to support
research & development and enhance innovation

Welcome to The Indian Rare Disease Registry. Do you wish to Participate in Registry?

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About The Indian Rare Disease Registry

This India registry launched on 27th April 2017 during The National Initiative for Rare Diseases (NIRD), organized by ICMR, AIIMS, JNU and PRESIDE, seeks to take the first steps to identify patients.

The Indian Rare Disease Registry is an effort to give Indians who are suffering from any form of a Rare Disease, a chance to be visible.

This registry would initially be hospital based or physician doctor based.

The scope of this registry will evolve over time, maturing from an outreach/community-building effort or a means for a basic understanding of patient and disease characteristics, to a supportive mechanism for research funding and attracting health care providers. ,

It  intends to comprehensively cover the spectrum of rare and ultra-rare disorders prevalent in the country but initially it shall only gather data of conditions which have an established treatment available in India or globally. With time, many of the other diseases (some without treatment) would also be incorporated. 

The Indian Rare Disease Registry

What is a Registry?

“an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).”

Gliklich R, Dreyer N. AHRQ 2010

What are Rare Diseases?

A disease or disorder is defined rare in India when it affects fewer than 1 in 2500 individuals.

What is a rare disease registry and its benefits?

  • Monitoring Prevalence, Incidence & Natural History of Disease over a period of time towards guiding policy decisions
  • Support research initiatives that aim to better understand the distribution and determinants of rare diseases
  • Facilitating access to innovations in genetics, molecular and computational biology, and other technological advances for patients suffering with rare diseases
  • Bridge the lack of data on rare disorders in our population thus facilitating access to supportive care for countless individuals suffering from these disorders

The Registry will seek to benefit the following:

  • Patients: They will be identified and therefore would have increased possibility of access to treatment depending upon the inclusion criteria
  • Government: will know exactly the number of patients and therefore provide resources to help address the patients’ needs
  • Research bodies: a plethora of information will be made available for research and development activities to flourish in India
  • Publications: the data would form the basis of several publications thereby strengthening the country’s stand as a global leader in healthcare
  • Clinical Trials: The patients and local R&D would also benefit from clinical trials
© 2017 The Indian Rare Disease Registry