Last updated 15 September 2026
These terms cover the IDDSG public site and the registry at registry.iddsg.org. They are short because the obligations are few, and specific because vague ones protect nobody.
Who may use the registry
Clinicians and research staff at a participating centre, whose account has been approved by the steering committee and given access to a particular study. Creating an account grants nothing by itself: a new account arrives pending, belongs to no centre, and can see no data until someone deliberately grants it. If you have signed in and can see nothing, that is not a fault.
Your account is yours
Do not share it, and do not let a colleague enter records under your name. Every record carries the identity of the person who entered and confirmed it; that is what makes a query answerable eighteen months later. If you believe someone else has used your account, tell us and it will be suspended the same day.
The rule that matters
Never enter a patient identifier. Not a name, not a hospital number, not a phone number or address, in any field, including free-text boxes and dictation. The registry is built so that it holds no identifiers; the only way one can get in is if a person types it. Doing so is a breach of these terms and, depending on the circumstances, of your own institution's rules.
What your centre is responsible for
- Obtaining institutional ethics approval before entering any patient, and whatever consent that committee requires.
- Keeping the link between study identifier and hospital record securely at the centre, and not sending it to IDDSG.
- The accuracy of what is entered. Data read automatically from an uploaded document or a dictation is a draft for you to check; once you confirm a record, it is yours.
- Telling us when someone leaves, so their access can be withdrawn.
What the collaborative does with the data
Pooled, de-identified data is analysed for the purposes set out in each study's protocol. Authorship follows recruitment and contribution according to the rules published with that protocol, agreed before the study opens rather than negotiated after the results are known. Your centre's own data remains visible to your centre throughout.
No individual centre's identifiable results are published without its agreement, and no analysis is released in a form that would allow a single patient to be picked out of a table.
What this is not
The registry is a research instrument. It is not a medical device, not a clinical decision support system, and not part of any patient's medical record. Nothing it displays — including any score, stratum or summary it calculates — should be used to decide the care of a patient. Clinical decisions belong to the treating clinician and the hospital record.
Availability
We run this carefully but it is a collaborative academic project, not a commercial service. There is no guaranteed uptime, and the registry may be unavailable for maintenance. We do not accept liability for loss arising from unavailability, and you should not build a clinical workflow that depends on it being reachable at a particular moment.
Suspension
Access may be suspended where an account is shared, where identifiers are entered, where data is exported or used outside the agreed protocol, or where a centre's ethics approval lapses. Suspension is a protective step rather than a punitive one, and we will tell you why.
Governing law
These terms are governed by the laws of India, and the courts at Chennai have jurisdiction.
Changes
Material changes to these terms will be notified to account holders, and the date at the top of this page will change.
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.