List of Disease Registries in India


Following a discussion on various Disease Registries from India shared by the members of IAMI (Indian Association for Medical Informatics), presenting the list and information about the various disease registries in India. I would like to thank IAMI for enabling such engaging discussions.
What is a Disease Registry?[1]
A disease registry is a special database that contains information about people diagnosed with a specific type of disease. Most disease registries are either hospital based or population based. A hospital-based registry contains data on all the patients with a specific type of disease diagnosed and treated at that hospital. A population-based registry contains records for people diagnosed with a specific type of disease who reside within a defined geographic region.

For example, a hospital can have a breast cancer registry with records for all the women in their breast cancer treatment program. The hospital-based registry would not include all the women with breast cancer in the community, since some women may go elsewhere for treatment. A population-based registry, on the other hand, would contain data on all the women with breast cancer who live in a certain area, regardless of where they receive their treatment.

People who live outside the geographic area covered by the population-based registry would not be counted, even if they receive medical care at a facility within the area. Population based registries must collect data from many sources in order to make sure that all cases in the community are accounted for.

Are There Other Types of Registries?[1]
There are several other types of registries in addition to disease registries. Procedure registries contain information about all persons undergoing a specific medical procedure, such as mammography or coronary artery bypass graft surgery. There are also exposure registries, which contain information about individuals at high risk of disease due to exposure to hazardous substances in the workplace or environment. Registries of families whose members have higher prevalence of inherited diseases are also a form of exposure registry.

The Basics[2]

The Agency for Healthcare Research and Quality defines a disease/immunization registry as "a tool for tracking the clinical care and outcomes of a defined patient population."1 Disease/immunization registries are often used to support patients with chronic diseases, such as diabetes, coronary artery disease, or asthma. You should look for disease/immunization registry functionality when selecting or upgrading to a certified EHR. Additionally, you can look for electronic health record (EHR) systems that allow providers to create internal registries for clinical diagnostics, medication efficacy, and quality improvement. Some specific functions that registries provide include:
  • Printed patient reports
  • Progress reports
  • Registry-generated exception reports
  • Stratified population reports2

Why It Matters[2]

Disease/immunization registries can help you improve quality by:
  • Supporting patient compliance by flagging missed appointments and/or overdue immunizations
  • Identifying and managing panels of patients
  • Using filters to identify patients most in need of intervention
  • Developing clinician reports
  • Managing patient follow up
  • Generating care-planning tools for individual patients.
All these features foster enhanced care coordination, better health care, and improved patient outcomes.

List of National Disease Registries in India:
Following is the list of Disease Registries shared by the members of IAMI.
S.No.
Disease Registry
Remarks
1.
National Cancer Registry Programmme

The National Cancer Registry Programme (NCRP) was commenced by the Indian Council of Medical Research (ICMR) with a network of cancer registries across the country in December 1981.

The main objectives of this Programme were:

1. To generate reliable data on the magnitude and patterns of cancer
2. Undertake epidemiological studies based on results of registry data
3. Help in designing, planning, monitoring and evaluation of cancer control activities under the National Cancer Control Programme (NCCP)
4. Develop training programmes in cancer registration and epidemiology.
2.
National Injury Surveillance Trauma Registry and Capacity Building Center

"The National Injury Surveillance,Trauma Registry & Capacity Building Center (NISC)" has been established at Dr. RML Hospital, New Delhi,under the aegis of Directorate General of Health Services, Minstry of Health & Family Welfare, Goverment of India.

It will be responsible for collection, compilation, analysis of injury related data and dissemination of this data to the general community, stake holders and policy makers for the purpose of reducing deaths and disabilities ensuing due to injuries.

This center will also coordinate activities related to capacity building through training of Medical/Para-Medical persons in the field of Emergency Care.

NISC would be linked to all the designated Trauma Care Facilities in the country for the purpose of data collection and training.
3.
Neonatal and Maturity onset of youth registry india

Diabetes is of several types.  Type 1 or insulin dependent diabetes and type 2 or non insulin dependent diabetes are the commonest forms of diabetes.  However, there are other forms of diabetes which, although less common are of great interest.  

Neonatal diabetes refers to a form of diabetes with onset below 6 months of age.  This type of diabetes is due to specific genetic mutations.  

Another type of diabetes is again due to single gene mutation and hence called as Monogenic diabetes.  The most common type of monogenic diabetes is Maturity Onset Diabetes of the Young (or MODY).

At the Madras Diabetes Research Foundation and
Dr. Mohan’s Diabetes Specialities Centre we are starting a national registry for Neonatal diabetes and MODY so that we can understand more about these conditions.

We invite doctors treating patients with Neonatal Diabetes and MODY to register their cases in this registry.  We also invite patients or their parents or close relatives who might have one of these conditions to register at this site.  

All information provided will be kept confidential.  If we can provide any professional help we would be glad to do so.  If necessary we would be happy to provide genetic screening for patients affected with neonatal diabetes or MODY type diabetes.
4.
National Center for Disease Informatics and Research

The main broad and overall objective of the centre is to sustain and develop a national research data-base on cancer, diabetes, CVD and stroke through recent advances in electronic information technology with a national collaborative network, so as to undertake aetiological, epidemiological, clinical and control research in these areas.
5.
Clinical Trials Registry - India

The mission of the Clinical Trials Registry-India (CTRI) is to encourage all clinical trials conducted in India to be prospectively registered, i.e. before the enrolment of the first participant.
6.
National Stroke Registry Programme

The main broad and overall objective of the centre is to sustain and develop a national research data-base on cancer, diabetes, CVD and stroke through recent advances in electronic information technology with a national collaborative network, so as to undertake aetiological, epidemiological, clinical and control research in these areas.
7.
National Institute of Medical Statistics

The NIMS supports excellence in the development, application, and dissemination of statistical science through technical consultation and statistical service, research, education, publications, dissemination and advocacy.

Our members serve in government and academia, advancing research and promoting sound statistical practice to inform public policy and improve human welfare.
8.
Genomics for Understanding Rare Diseases

GUaRDIAN is a collaborative research programme towards understanding the genetic basis and molecular mechanisms underlying rare genetic disorders.

We use the advanced sequencing technologies, extensive bioinformatics and animal models. Our collaborators include a large number of clinicians and scientists.
9.
National Institute of Epidemiology

Vision: To be a catalyst for a vibrant national health system through responsive research, education and training in epidemiology and public health

To effectively contribute in enhancing the quality of life of Indian citizens and influencing public health practice and policies through research, education and training.
We will strive to accomplish our mission by:

  • Working with national and international partners in health research with effective use of innovative state-of-art technologies
  • Aligning our research with all key stakeholders to generate and implement evidence-based health strategies for an effective and efficient National health system
  • Setting standards in public health education that would emphasize professionalism as a core competency
  • Strengthening human resources for National public health services through education and training and building bridges between educational and research institutions
10.
Central Bureau of Health Intelligence

CBHI headed by Deputy Director General & Director, has four divisions viz.
(i) Policy & Infrastructure,
(ii) Training, Collaboration & Research,
(iii) Information & Evaluation, and
(iv) Administrative

Along with Six Health Information Field Survey Units (FSUs) located at Bangalore, Bhopal, Bhubaneswar, Jaipur, Lucknow & Patna and Regional Health Statistics Training Centre (RHSTC) at Mohali, Punjab (near Chandigarh).
11.
Ministry of Statistics and Programme Implementation

The Ministry of Statistics and Programme Implementation attaches considerable importance to coverage and quality aspects of statistics released in the country. The statistics released are based on administrative sources, surveys and censuses conducted by the Centre and State Governments and non-official sources and studies.

The official ministry for number crunching
12.
National Cancer Registry Programme


13.
Open Government Data (OGD) Platform India

Open Government Data (OGD) Platform India - data.gov.in - is a platform for supporting Open Data initiative of Government of India.

The portal is intended to be used by Government of India Ministries/ Departments their organizations to publish datasets, documents, services, tools and applications collected by them for public use.

It intends to increase transparency in the functioning of Government and also open avenues for many more innovative uses of Government Data to give different perspective.
14.
Integrated Disease Surveillance Programme(IDSP)

This web portal is for online reporting under Integrated Disease Surveillance Programme (IDSP), one of the major National Health Programme under National Health Mission for all States & UTs.

The key objective of the programme is to strengthen/maintain decentralized laboratory based IT enabled disease surveillance system for epidemic prone diseases to monitor disease trends and to detect and respond to outbreaks in early rising phase through trained Rapid Response Team (RRTs).
15.
National Health Mission - Govt. of Rajasthan

NHM data ( 2008 to 2016 )
16.
Rural Health Statistics - 2016

https://data.gov.in/catalog/rural-health-statistics-2016
It provides data of Rural Health Statistics 2016. Rural Health Statistics 2016 contains Infrastructural information and building positions of Sub Centres, Primary Health Centres (PHCs) and Community Health Centres (CHCs).
17.
National Death Registry of India - Beta

http://14.139.245.44/ndri/
E-death note module is an online module for Doctors to prepare death note .Each user has a unique login id and password to prepare e death note. The username and password will be provided by the concerned NIS. The doctor has to login using the username and password and death note should be made in the entry form .All the details of the patient should be filled in the death entry form including cause of death. Once the form is filled it has to be saved by the doctor .The international death form will be auto filled by the system when Regno. is entered. Other forms like death certificate, print card, opd form will also be auto filled.

Additional Important Links
S.No.
Website
Remarks

1.
Data Managment :: Integrated Disease Surveillance Programme(IDSP)

Integrated Disease Surveillance Project aims at collecting, compiling, analyzing and using data on various target diseases for surveillance and rapid response to prevent or control spread of diseases in the communities.

As data are computerized, it becomes necessary to standardize formats used for recording and reporting information at various levels. Under IDSP, data are collected on epidemic prone diseases on weekly basis (Monday–Sunday).
2.
Outbreaks :: Integrated Disease Surveillance Programme(IDSP)

WEEKLY OUTBREAK SURVEILLANCE

One of the most important objectives of IDSP is strengthening of Disease Surveillance System for epidemic prone diseases to detect and respond to outbreaks.

CSU, IDSP receives disease outbreak reports from all the 36 States/UTs on weekly basis through its IDSP portal viz www.idsp.nic.in. Even NIL weekly reporting is mandatory.
3.
National Health Profile 2005 (onwards)

CBHI comes out with the Annual National Health Profiles
4.
Infosys Foundation

Access to primary healthcare, awareness of basic hygiene, and treatment of underprivileged patients beg attention. The Infosys Foundation advances healthcare by augmenting existing healthcare infrastructure. Since its inception in 1996, the Infosys Foundation has constructed hospital wards, built dharmashalas (rest houses), and provided medical equipment to various hospitals across India.

The Foundation has also donated medicines in addition to organizing health camps in rural India. The Infosys Foundation has donated more than INR 50 crore to expand the capacity of hospitals across India and is involved in several healthcare programs
5.
Health Analytics India - An Initiative By dataLEADS

Indian healthcare data, information and analytics
6.
THB

THB is a clinical research and data analytics company. At THB, we unlock the power of healthcare data to provide personalized care to patients, seamless and convenient patient diagnosis to doctors, as well as clinical research for a variety of healthcare stakeholders, including pharma, and governments.

WE USE TECH-ENABLED SOLUTIONS TO SOLVE ALL YOUR HEALTHCARE DATA PROBLEMS
7.
George Institute for Global Health 

http://www.georgeinstitute.org.in/
The Indian Chronic Kidney Disease (ICKD) Study: Design and Methods | The George Institute for Global Health http://www.georgeinstitute.org.in/publications/the-indian-chronic-kidney-disease-ickd-study-design-and-methods

Dialysis outcomes in India: a pilot study | The George Institute for Global Health http://ow.ly/BJ9h30fIHVP

Disclaimer: The following listing is not intended to be comprehensive. Our intent is to provide information about registry efforts at the national level. This is an indicative list, which will be updated as and when new data is available. While the list is collated based on the discussions held in IAMI Group, keeping the list updated and accurate will be undertaken by the team at HCITExpert Blog.

Last Updated: 8th October 2017

References:
[2]: What is a disease/immunization registry?:



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