A web-based registry linked with Aadhar card for people with hemophilia (PwH), a first in the country, was launched on Monday in Karnataka's Mysuru, providing details like data on the incidence and prevalence of the genetic bleeding disorder, treatment centers, and medicine availability to help ensure timely medical aid to the patients suffering with the disease.
On the first day itself, 135 patients registered online with the website launched by the Karnataka Health Ministry with the technical support from Hemophilia Federation India (HFI) and Hemophilia Society Bangalore Chapter. "The registry has been linked with the Aadhar card to avoid duplication as the enrolled patients will be availing Government schemes' benefits," said Vikash Goyal, National President of the HFI.
Goyal said the website will help any doctor in the State to avail the case history of the patients if the latter goes to other centers for treatment, ensuring uniform medical aid.
In case the project, launched on pilot basis, is successful, it will be replicated across the country, said a senior official from the Union Health Ministry which has provided funds under the centrally sponsored National Health Mission. Those present on the occasion included nodal officer and deputy director of Health Department Dr SK Banakar, Mysuru DHO Dr Basavaraju, KR Hospital MS Dr Chandrashekhar and former MlA and HSMC patron Maruti Rao Pawar.
Karnataka has around 1,700 PwH while overall across the country, there are 20,000 PwH. It could be more as only 15 per cent of Indians suffering the genetic disorder has been identified while the rest have remained undiagnosed, say the experts. Website will help save the patients as well as doctors save time on travel and harmful delays.
The registry will help the bleeding disorder community and as well as the stakeholders have a better understanding of the prevalence, disease severity, inhibitor development, annual bleed rate, type of replacement therapy, joint outcomes and other patient reported outcomes.
Hemophilia is a group of hereditary genetic disorders that impairs the body's ability to control blood clotting. Even after a minor injury or cut, patient's blood does not clot normally due to the absence of clotting proteins called Anti Hemophilia Factors.
If not taken care, recurrent and prolonged bleeding into joints, muscles and other sensitive organs can lead to permanent disability and even death.
According to a study conducted by the World Federation of Hemophilia, India has the highest number of hemophiliacs, of which over 70 per cent do not have adequate knowledge or access to treatment.