PARTICIPATE IN RESEARCH

You can contribute to the understanding of autism and make a difference in the lives of people with autism and their families by participating in research or surveys. You can do this by becoming a part of the Indian autism registry (INAR).

INAR is a tool to collect information about families of children and adults with autism in India. While we do not know how many people in India have an autism spectrum disorder, we must start to understand more about those children and adults in India who already have a diagnosis. What characteristics do children and adults have? Where do families receive a diagnosis? Do adults receive any training support?

With the help of families throughout India, we will be able to provide answers and move the autism field forward.
How can you get involved? Learn more about INAR through the FAQs below. Then, tell us: What’s your story? Contact us to be a part of INAR and join us on this quest!

Frequently Asked Questions

A registry is an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons who have a particular condition or disease. Registries are often used to understand the magnitude of a health issue. Internationally, as well as in India, there are registries for many different conditions, diseases and events.

Registries are often used to understand the magnitude of a health issue. INAR aims to:
1. Combine demographic, developmental and behavioural information on children and adults with autism, and obtain systematic data on diagnostic patterns, treatment practices and areas of need across all ages of the lifespan of individuals in India;
2. Use data obtained from families in India to inform important policy implications among the medical and educational fields, and the Indian central government.
Once the INAR partner project is effectively established, data collection will allow:
1. Participant recruitment into research studies that will foster the expansion and quality of research on autism in India and
2. De-identified data from INAR to be offered to qualified research studies

In the short run, there is no concrete benefit to any individuals who participate in INAR. Your child also will receive no direct benefit. Over time, however, the accumulation of data will ultimately benefit all families of children with autism by using information to inform key policy changes. By joining INAR, you are helping the larger autism movement in India.
There are no known risks of joining INAR. The questions asked are not highly personal, and should not cause any discomfort. Moreover, all information provided is entirely secure, so there is no risk to your confidentiality.
Since it is still often stated that autism is rare in India, there is a dearth of funds and legal recognition provided for autism when compared with some other disorders. It will be more compelling to provide the Government of India with numbers that show the extent of the condition (e.g., that is ASD affects families across different states and areas, of all backgrounds), what resources are available for children as well as adults with ASD and the needs of the families caring for individuals with ASD. INAR data can have an impact at the Central as well as State levels for a variety of necessary services for each individual with an ASD.
Yes. We understand that it is common for families to receive conflicting information about their child who may or may not receive a diagnosis of autism in India. You will be asked questions about your child's autistic behaviours and any past diagnoses you may have received.
By joining INAR, you will be asked questions on the following topics: Family background; Pregnancy, Birth and development; Diagnosis; Current level of functioning; Child's autism characteristics; Current educational experiences; Access to government schemes; and Interventions and treatments.
Yes. The primary purpose of INAR is to describe and serve Indian families and Indians living in India. However, we recognize that geographic borders are not always meaningful distinctions for families with a child with autism. Any individual with one Indian parent, regardless of the country in which they live, is eligible to enter information. We will ask you which country you live in so we can keep that information separate as needed.
No parent or professional will contact you. The only contact you will receive is from INAR staff if there is any clarification necessary about your information.
Yes. At the end of the INAR questions, you can choose to be added to a list to receive updates from AFA. You can also be added to AFA's mailing list without joining INAR by clicking here.
All your information automatically goes into a database. A project member will check for missing items and possible data entry errors. Once the information you have entered has been checked, you may be contacted if your response to certain questions was unclear. Over time, your information will be added to a database with hundreds of other families and will be compiled to provide summary statistics. For example, what per cent of children aged 6-16 are attending school currently? What is the average age of diagnosis for children in different parts of the country? These summary statistics will be available on the INAR Data page once we have information from a minimum of 100 families.
Absolutely no personal or identifiable information will be included in the registry. We collect identifying information only to verify that we do not have duplicate data in the system, to provide follow up where needed, and to provide you with information about studies that you may be interested in and other updates about autism advocacy and services in India.
Confidentiality is a priority in INAR. The database that is used to store the registry information is completely secure and the only personnel who can access the data are those who work specifically on INAR.

At the end of the questions, you will be asked whether you are interested in being contacted for future research studies.

If you check "yes," you will receive emails from INAR with information about new research projects.

If you are interested in participating in a specific research project, you will receive relevant information and can contact the researcher directly to participate.

INAR is run by Action For Autism. At this time, only select staff of the INAR project has access to information entered into the system.

Families without Internet access can participate by completing a paper-based form of the questions. Data will be entered by INAR staff. For a paper-based copy of the survey, contact us or call 98998 88156.

When you enter the INAR registration page, you will be given the option to complete information on more than one child. Only some questions will be asked about the second child, because it will not be necessary to repeat questions about your family or background.

You will soon be able to enter your own details. We are currently developing a separate protocol for people with ASD to enter their own information. Please write to indianautismregistry@gmail.com to let us know you would like to be contacted when this is ready and we will get back to you when it is.

Currently, INAR is available only in English. It will soon be available in Hindi and other languages.

I'm a grandparent or I have a relative in my family with ASD. Can I enter details on their behalf?

INAR is meant to be completed by the person who knows the child with autism best. Certain questions may only be known by the parent, such as details of the child's developmental and diagnostic history. However, if you are the person who knows the child best (or that person is not interested in entering information), just confirm that information about the child has not already been entered in INAR before proceeding.

INAR is a registry that is meant to be completed by families. Certain questions require information that only families can provide. You can help INAR by encouraging the families you know to join themselves.

To obtain subject recruitment assistance from INAR:
1. Have your proposal reviewed by your own Institutional Review Board (IRB).
2. Submit an application to INAR. In this application, you will need to include the review from your IRB and the recruitment letter you wish to send.
3. The study will be reviewed by an INAR panel. If a research study qualifies, INAR queries the Research database based on your study's recruitment criteria, identifies participants who qualify, and sends potential participants the study's IRB-approved recruitment letter via email.
4. Families interested in participating will then contact you for further information and to participate.
I provide services to people with ASD. I really feel my services would be valuable and would like to contact INAR participants. Can I access these families as well?
INAR is intended only for research and we unfortunately cannot provide information to families about available services through this means at this time.