A new proposal suggests creating a Patient Data Collective (PDC) for rare diseases in India, modeled on the Amul dairy cooperative. This collective would pool patient data to accelerate drug discovery and clinical trials, addressing the challenge of small patient populations for rare diseases.
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- ›ICMR Rare Disease Registry Patients: ~4,000
- ›Specialised Hospitals Uploading Data: 19
- ›Target this Data: ~4,000 patients registered in ICMR rare disease registry from 19 hospitals
- ›Target this Nodal Body: Indian Council of Medical Research (ICMR)
- ›Target this Legal Point: New Drugs and Clinical Trials Rules (recent updates embracing computational modelling)
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