1. Retina India Symposium
National Registry for Retinal Diseases
Dr Saurabh Luthra
Drishti Eye Centre,
Dehradun, India

2. Financial Disclosure
None

3. 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.

4. Foundation Fighting Blindness
National 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.

5. National Registry Aims
1. Helping generate data for prevalence
studies.
2. Such databases would allow better estimates
of the prevalence of retinal diseases in Indian
population on an on-going basis

6. 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

7. National Registry Aims (Contd.)
5. A registry would also be able to quantify the
impact of a retinal disease on Quality of Life
(QOL) of Indian patients, the data for which we
currently lack.
6. Data such as visual acuity and visual field
loss, and its impact on the person’s daily
activities. Such evaluations will help determine
the social and economic impact of this disease.

8. 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

9. 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

10. 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

11. ROP Registry
• Established by Dr Lingam Gopal at Sankara
Nethralaya, Chennai
• Will come on the Retina India platform

12. National Registry
• Software being developed by TATA
Consultancy Services (TCS)
• Will start with three diseases initially, namely
RP, LCA & ROP.

13. 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

14. 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

15. 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 physician's
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

16. 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 up
2. Data from smaller centres where patient is
partially worked up
3. Data from patients themselves

17. 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).

18. 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.

19. Thank You