Last updated 15 September 2026
This page describes what the Indian Digestive Diseases Study Group does with information, and it is written to be read rather than to be survived. Two quite different kinds of information are involved and it matters which is which: the details of the clinicians who hold accounts, and the clinical records entered about patients. They are handled differently, and the second kind never includes anything that names a patient.
No patient is identified in this registry. No name, no hospital number, no address, no telephone number. Records are held under a study identifier issued by the recruiting centre, and the link between that identifier and the hospital record stays at that centre, under its own control. Nobody at IDDSG can work backwards from the registry to a person.
If you hold an account
What we hold about you
Your name, your email address, the centre you work at, and your role in each study you have been given access to. We also keep a record of when access was granted, by whom, and when it was withdrawn, because a registry that cannot say who could see what, and when, cannot be audited.
How you sign in
Two ways, and you choose. You can ask for a one-time link to be emailed to you, in which case we hold the address you gave. Or you can sign in with Google, in which case Google tells us your name and your email address and nothing else. The only permissions the registry ever requests are email and profile. It has no access to your Gmail, your Drive, your calendar or your contacts, and it cannot acquire that access without asking you again in a screen that says so.
There is no password, so there is no password to be stolen from us. A session cookie keeps you signed in; it carries no information about you beyond the session itself, and clearing it signs you out.
What we do not do
We do not use analytics on this site or in the registry, we do not run advertising, we do not profile you, and we do not sell, rent or share your details with anyone for any purpose unconnected with running the collaborative. There is no mailing list you are added to without asking.
One honest caveat: this site loads its typefaces from Google Fonts, which means Google's servers see the request and therefore your IP address, as they would for any site that does the same. Nothing about you or your account is sent with it.
Clinical data about patients
What is recorded
Clinical information defined in advance by a published data dictionary: presentation, investigations, treatment, complications and outcome, recorded against a study identifier. Age is recorded, sex is recorded, dates of clinical events are recorded. A patient's name, hospital number and contact details are not fields that exist in the database, so they cannot be entered even by mistake in the ordinary course of using it.
Free-text boxes, and why they are reviewed
A few fields let a clinician write a short free-text answer where the dictionary has no option — an unusual operation, for instance. Free text is the one route by which an identifier could reach the record, so those entries are reviewed by the steering committee, and anything naming a person is corrected at source before any analysis leaves the group.
Who can see it
A centre sees its own patients and no others. That is enforced by the database itself rather than by the screens you see, so it holds even if a page has a bug. The steering committee can see how many records each centre has entered, and aggregate distributions across the collaborative, but small counts are suppressed so that a single patient cannot be inferred from a table.
Consent and ethics approval
These rest with the recruiting centre. Each participating centre is responsible for obtaining its own institutional ethics approval and for whatever consent its committee requires before entering any patient. IDDSG does not obtain consent from patients directly and is not in a position to.
Where the data lives, and who else is involved
The database is hosted in India, in Amazon Web Services' Mumbai region, through Supabase. The application is served by Vercel. Beyond those two, a small number of services see specific things for specific reasons, and they are listed here rather than buried:
| Service | What it sees | Why |
|---|---|---|
| Supabase | The database and uploaded documents | Hosting, in Mumbai |
| Vercel | Web requests to the site and registry | Serving the application |
| Your name and email, if you sign in with Google | Confirming who you are | |
| Resend | Your email address, for sign-in links | Delivering the email |
| Anthropic | Text of an uploaded document or a dictation, when you use those features | Reading it into form fields for you to check |
Uploaded documents
If you upload a discharge summary or an operation note so that its values can be read into the form, that document is stored and remains readable for thirty days, after which it is withdrawn and its filename removed. The values extracted from it are shown to you with the quoted source text, and nothing is saved until you accept it. Extraction is a convenience, not an authority: the person entering the record remains responsible for what the record says.
Dictation, and something worth knowing
The microphone button uses your browser's own speech recognition. In Chrome and Safari that means the audio is transcribed on Google's or Apple's servers, not ours — this is how those browsers implement the feature, and it applies to any site that uses it. The resulting text is then read into form fields as above. The practical consequence is simple and worth stating plainly: dictate the case, not the patient. Describe what happened without saying a name or a hospital number, and none of this matters.
How long things are kept
Clinical records are kept for the life of the study and its analyses, as research records ordinarily are; they contain no identifiers, so they do not become less safe with age. Uploaded documents are withdrawn after thirty days. Account details are kept while the account exists and for as long as an audit trail of who had access is needed afterwards. If you leave the collaborative, your access is revoked and the records you entered stay with the study, as they must for the analysis to remain honest.
Your rights
Under India's Digital Personal Data Protection Act 2023 you may ask what personal data is held about you, ask for it to be corrected, ask for it to be erased where we are not required to keep it, and raise a grievance about how it has been handled. Write to the address below and you will get a reply from a person.
These rights concern data about you. They do not extend to the de-identified clinical records, which are not personal data in our hands: we hold no means of connecting them to anybody. A patient who wishes to enquire about their own participation should approach the hospital that recruited them, which does hold that link.
Changes to this page
When this policy changes in a way that matters, the date at the top changes and account holders are told. Silent revision of a privacy policy is a bad habit and we would rather not acquire it.
Getting in touch
Write to k.gautham@gmail.com. That address reaches the people who run the collaborative, and it is the address to use for any question about this page, about data held about you, or about a concern you would like looked into.