PGIMER Chandigarh to get ‘centre of excellence’ tag for treatment of rare diseases
The premier institute among eight others to get the tag; these centres will provide a number of facilities with comprehensive management and treatment of rare diseasesUpdated: Jan 15, 2020 00:25 IST
The Postgraduate Institute of Medical Education and Research Chandigarh is among the country’s eight selected institutes which will be notified as ‘Centre of Excellence’ by Union health ministry for treatment of rare diseases.
In 2018, an expert committee was constituted by ministry of health and family welfare to review the policy and draft a revised national policy on rare diseases. After meetings were held between several stakeholders— patient support groups, drug manufacturers, regulators—and senior officials of several ministries, the draft notification was published on January 13.
According to the notification, Centres of Excellence for Rare Diseases will provide a number of facilities with comprehensive management and treatment of rare diseases.
Director PGIMER, Dr Jagat Ram, said this development would give them more opportunities to conduct research and suggest treatments for rare diseases. “Doctors in many departments are conducting work in this field and this tag will give us opportunities for path-breaking research. Since we have patients coming from across the country, a number of rare diseases are reported here,” Dr Jagat said.
For instance, in prenatal diagnosis, amniocentesis and CVS testing (which screens abnormalities in a developing fetus) would be offered to pregnant women in whom there is a history of a child born with a confirmed rare disease. Samples would be sent for testing and confirmation at Centres of Excellence for Rare Diseases, a PGI official said.
Similarly, newborns with a family history of a rare disease (with confirmed diagnosis) will be offered neonatal screening and diagnosis, if required, at these centres, and will include newborn screening for small molecule inborn errors of metabolism by liquid chromatography-tandem mass spectrometry, diagnosis of severe combined immunodeficiency (SCID) by T-cell receptor excision circles (TREC) and diagnosis of lysosomal storage disorders (LSDs) by micro fluids.
Regarding the cost of treatment, the Centre will create a digital platform for bringing together notified Centres of Excellence where patients of rare diseases can receive treatment and prospective voluntary individual or corporate donors willing to support treatment of such patients. Funds received through this mechanism will be utilised for treatment of patients suffering from rare diseases, the draft states.
The notified institutes will have to share information relating to patients and the diseases from which they are suffering, as well the estimated cost of treatment and details of bank accounts for online donation. Donors will be able to view details of patients and donate funds to a particular hospital. This will enable donors from several sections of society to donate funds to utilised for treatment of patients suffering from rare diseases.
The other institutes selected to be Centres of excellence are All India Institute of Medical Sciences–New Delhi, Post Graduate Medical Education and Research–Kolkata, Center for Human Genetics (CHG) with Indira Gandhi Hospital–Bengaluru among others.
What are rare diseases
A disease that occurs infrequently is generally considered a rare disease, and it has been defined by different countries in terms of prevalence – either in absolute terms or in terms of prevalence per 10,000 population. A country defines a rare disease most appropriate in the context of its own population, health care system and resources.