Australian Inherited Retinal Disease Register, DNA Bank• Register of subjects affected by Inherited Retinal Diseases (IRDs) & their family members since 1984. Includes demographic information & the results of electrophysiological, psychophysical and ophthalmological investigations. Since 2001 DNA also collected & stored from subjects. In 2009 additional funding has enabled the register & DNA bank to be expanded Australia-wide.
Foundation Fighting BlindnessNational Retinal Degenerative Disease Registry.• Urgent mission of the Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa (RP), macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.
National Registry Aims1. Helping generate data for prevalencestudies.2. Such databases would allow better estimatesof the prevalence of retinal diseases in Indianpopulation on an on-going basis
National Registry Aims (Contd.) 3. Precise matching of patients to the best treatment option, as and when available 4. Informing registered patients about advances in treatment & research
National Registry Aims (Contd.)5. A registry would also be able to quantify theimpact of a retinal disease on Quality of Life(QOL) of Indian patients, the data for which wecurrently lack.6. Data such as visual acuity and visual fieldloss, and its impact on the person’s dailyactivities. Such evaluations will help determinethe social and economic impact of this disease.
National Registry Aims (Contd.) 7. Conduct clinical research studies by comparing treatment options of the registered patients 8. Disseminate information for planning & early detection programs, especially in regards to diabetic retinopathy
National Registry Aims (Contd.) 9. Respond to state & local issues about the concerns of the retinal diseases 10. Publications of reports, and journal articles from the database in peer-reviewed journals 11. Provide information to citizens, legislators, and health professionals
National Registry Aims (Contd.) 12. A social cause to bring patients together, to increase patient awareness and education 13. Regional registries receive data and check for accuracy, perform analyses and conduct studies specific to the region, and feed information to the central registry
ROP Registry• Established by Dr Lingam Gopal at Sankara Nethralaya, Chennai• Will come on the Retina India platform
National Registry• Software being developed by TATA Consultancy Services (TCS)• Will start with three diseases initially, namely RP, LCA & ROP.
National Registry (Contd.)• Dr Subhadra Jalali, L V Prasad Eye Institute, Hyderabad will be the Director for The Registry Project.• Dr Aditya Verma, Sankara Nethralaya, Chennai will be the coordinator for the ROP Registry
National Registry (Contd.) The current registry is off-line, but once complete it will have the following features:• Totally web-based for easy input and quick access• Patient information confidential• Highest security systems will be put into place (currently 128-bit encryption)• Patients identified by a unique identification number (UIN); this number will be generated automatically by the software
National Registry (Contd.)• Referring physicians will have total control on their patient data; provisions will be in place to prevent unauthorized access to a particular patient without the referring physicians permission (physicians should not fear that they will loose their patients to someone else)• Referring physicians have a say in the way their patients make the choice to a certain treatment
National Registry• Institutions collect and report data from their medical records, while individual physicians report information to the closest center, or to the central registry• 3 levels of data:1. Data from Institutes where patient is totally worked up2. Data from smaller centres where patient is partially worked up3. Data from patients themselves
National Registry (Contd.)• All data collected by the registry/s would be subject to confidentiality provisions (~HIPPA)• Confidential information can only be released for research purposes to investigators - Planned study protocols have to be approved both by their own institution’s IRB, and by the IRB of the central registry (Scientific Advisory Board of Retina India).
National Registry (Contd.)• Clinical data (without any patient identification data) will be stored on a server, with highest security mechanisms in place, linked via the internet to various eye institutes• The Registry will also function for a social cause. It will bring patients together to increase patient awareness and education.