Terms of Use

Version 2, 23/02/2026

By proceeding to register an account to access the ILDgenomics.com platform I implicitly consent to use the service according to all the terms listed below:

Registering accounts

I agree to register an individual account to ensure traceability and legitimate access. I agree that my individual account login details are personal, and I will not share these details with others.

I agree to use the ILDgenomics.com platform only within its defined scope (as described on the ILDgenomics.com website), and to seek further clarification from the ILD Genomics Oversight Committee, if necessary, before registering an account to access and use the platform.

Confidentiality and privacy

I am responsible for maintaining patient and relatives’ confidentiality and that I will only contribute anonymized genetic test results and clinical data, as this data is sensitive in nature.

I am responsible for assessing the risk of patients being personally identified by the data that I submit, and to minimize this risk to the best of my ability.

I will not attempt to re-identify any individuals based on the information stored on the platform as this is strictly prohibited.

I am responsible for understanding what legal and governance requirements apply at my site and in my local jurisdiction / county of practice and for following these requirements prior to submitting anonymized data to the platform, Where these requirements apply, I will be responsible for obtaining specific informed consent from participants if required.

I agree that I may be connected to other registered contributors by sharing my contact details (name and e-mail address) if a legitimate request is received by the investigators and with the agreement of both parties.

I agree that any communications / data sharing / agreements entered into following my connection with another contributor is independent of this platform and that it is my responsibility to maintain patient and relatives’ confidentiality when communicating with other contributors, abiding by my own jurisdictional and institutional ethical requirements.

I agree and accept that the investigators will not be directly involved or responsible for any data sharing or communication that occurs externally to the platform.

Data

I understand that the investigators cannot guarantee that the information contained in each anonymized record submitted by individual contributors is legitimate or correct.

Fair use

I agree to not engage in abusive activities including but not limited to: creating multiple accounts for myself, sharing my account details with others, spamming, attempting to block the functionality of the website in any way, scraping data or similar approaches, attempting to personally identify individuals based on records stored in the database, and/or entering false or malicious information to the database. I understand that my account will be suspended if found to be engaging in abusive activities.

I agree that the database is not intended to be used directly for patient care in healthcare settings, and it is for research and information purposes only. I accept that the information on the platform does not constitute medical advice.

I agree that the investigators on this project cannot be held responsible for patient care decisions or recommendations that I make as a registered / named healthcare provider.

I agree to inform and liaise with the ILD Genomics Oversight Committee if I identify a risk of data or confidentiality breach and to clarify any issues related to compliance with the Terms of use, publication policies or any other functionality of the platform in my particular case, in order to contribute to the ethical and fair use of the platform.

Referencing

I agree to reference the ILDgenomics.com platform in any publication / communication that uses its data, to ensure recognition of the platform and the contributions of all its users.

I agree to provide a digital signature upon creation of the account to confirm that I agree to my legal, ethical and governance responsibilities as outlined above.