mational emophilia
egistry

Hemophilia Federation (India)

 er iew

NHR is a collection of
records of people
identified with
hemophilia or inherited
bleeding disorders in
India. A centralized
repository for
study/analysis to
achie e dream of ´Child
without Painµ for future
generation
NHR Personal Information

Medical/Clinical

Educational

ccupational

Economical

Insurance
NHR ² Personal Information

PWH personal details like

Name, Father/Guardian,
Sex, D
,
Address,Town, City etc.
This also pro ide local
chapter membership
details and family
history of PWH
 NHR ² Clinical Information

Patient Description Family History

Deformity

Rehabilitation

Complications
NHR ² Educational/ccupational

HFI wide network and our

medical researchers are
making PWH to achie e their
dream. This information will
assist PWH in choosing right
career/job to match is
condition. In future it will be
expanded for other social
importance acti ity.
NHR - Insurance

ur go ernment pro ides

healthcare benefits on
different forms. Some of this
like ESI, CHGS, Railways,
Yashaswini, arogyasri etc. This
Information help in co-
ordination/lobbying on
national/state le el.
Implementation

66 regional chapters of HFI will

collect the data from each of
their member with gi en format.

E ery a ailable details are

update to our centralized registry

Data can be accessed off-line on-

line, while on mo e with secured
login
 Implementation

Confidentiality and registry management is protected by

FDA/IDA guidelines

HIPPA/HL7 standards are implemented for international

compatibility

Healthcare professionals can do data analytics to know

better treatment
 NHR Team
{

 

VP Medical VP De elopment

RCC-N/S/E/W
Implementation /
Eng Team
Chapters

ñ





 
 

 



 


 NHR Status

1
NHR Proposed on Sep 2009 AGM at
Ranchi

2
Pre-Alpha er of application showed to
HFI EC on Jan, 10 at Da angere.

3
Data-Entry of existing 3900 PWH
hardcopy form are feed to registry
4

Alpha NHR demo to all the chapters on

Sep, 10 Delhi AGM
NHR Screencast
Registry Homepage
Dashboard
Grid iew of PWH List
Personal Details
Clinical Details
Clinical Details 2

leed Log
Medicine Issue by Chapter
Reports
Reports
 Next Step

Collection of data from all o er India by isiting each

Data Collection
chapter by appointed person.
ack-end support system
which will be located in
angalore to help data collection.

Data Migration Data Migration to li e en ironment as and when data

recei ed by technical team.

Data Refining Data clean-up and report generation for each chapters of
their PWHs

Training Training to local chapter Representati e to handle NHR

 Timeline

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