Lupus GPT FAQ and Terms of Use

Below are a few quick answers on what LupusGPT is, how to use it well, and what it is not designed for.

LupusGPT is a free information tool created to help people living with lupus access reliable, patient-friendly general information about lupus.

It has been built using a curated library of valid documents on lupus, reviewed by patients and specialist lupus doctors, so users can ask questions in natural language and receive answers grounded in those documents.

LupusGPT is designed to make general lupus information easier to access. It is not a substitute for medical care or advice from your own healthcare team.

LupusGPT is for:

  • people living with lupus
  • family members and carers
  • people who want to understand lupus better
  • anyone looking for reliable general information about lupus

LupusGPT works best for general questions about lupus, for example:

  • What is lupus?
  • What are common lupus symptoms?
  • Can lupus affect the kidneys?
  • Why is sun protection important in lupus?
  • What are corticosteroids used for in lupus?

As with any digital tool, please do not use LupusGPT for:

  • personal medical advice
  • diagnosis
  • emergencies
  • urgent decisions about treatment
  • questions that require knowledge of your own medical history, test results, medicines, or current condition.

For example, LupusGPT is not the right place to ask:

  • “Do I have lupus?”
  • “Is this rash my lupus?”
  • “What should I do about my blood results?”
  • “What treatment is right for me personally?”

Those types of questions are for your doctor or clinical team.

LupusGPT works best when questions are asked in a general way.

For example, a good way to ask might be: “What are common signs of a lupus flare?”

A question phrased like this is unlikely to receive an answer: “Am I having a lupus flare right now?”

A good rule is this: Ask about lupus generally, not about yourself personally.

If LupusGPT does not answer your question, it may be because the answer is not contained in its library of lupus documents, or because the question is too personal or too specific.

A good next step is to try rephrasing your question in a more general way.

For example, instead of “Why am I so tired all the time?”, try asking: “Is fatigue common in lupus?”

If LupusGPT still cannot answer, it may be that the information is not in its current document library.

Questions that do not receive an answer may be reviewed in anonymised form to help us identify gaps, improve the tool, and strengthen the document library over time, as explained in the privacy information.

The document library is reviewed regularly. So if LupusGPT cannot answer your question today, it may be able to answer it in the future.

As with most digital tools, when using LupusGPT please do not enter personally identifiable information.

Digital tools can be useful for information, education, and understanding. They do not replace clinical judgement or personal medical care.

No. LupusGPT cannot diagnose lupus or any other condition. Diagnosis requires proper medical assessment by a qualified healthcare professional.

No. LupusGPT can explain general information about treatments used in lupus, but it cannot tell you what treatment is right for you personally.

Treatment decisions depend on your symptoms, manifestations, medical history, current medications, and many other individual factors. Treatment decisions are not for digital tools, but are made with your healthcare team.

No. If you are acutely unwell or worried about urgent symptoms, please seek urgent medical help in the usual way.

LupusGPT is built on a curated library of valid lupus documents selected and reviewed by patients and specialist lupus doctors.

LupusGPT does not search the whole internet to answer questions on lupus. Its answers are intended to stay within the library of documents that have been chosen for the tool.

No. Like any tool, LupusGPT has limits.

If the answer is not contained in the library of documents LupusGPT is built on, it will not be able to answer. Some questions may also be too specific, or outside the scope of the tool.

EasyLupus is a feature of LupusGPT. EasyLupus has been built on the same curated library of valid lupus documents, but it is designed for different user needs. EasyLupus was created for users who benefit from shorter answers, simpler wording, and a more accessible format. EasyLupus is also multilingual.

Please let us know!

If you notice:

  • something unclear
  • something inaccurate
  • a topic that is missing
  • an answer you think could be improved
  • or any other issue

we would very much like to hear from you!

Feedback helps us strengthen the tool and make it more useful for the lupus community. E-mail us at: lupusgpt@lupus-europe.org

LupusGPT is a collaborative, patient-led initiative, developed by LUPUS EUROPE, specialist lupus doctors, and technical AI experts.

Its aim is to help people living with lupus access free, reliable information on lupus across multiple languages.

If you believe you have found a technical or security issue with LupusGPT, please do not try to test, access, extract, copy, or share data or technical information from the tool. Please contact us directly at lupusgpt@lupus-europe.org so that we can review it safely and responsibly.

LupusGPT does not ask for, collect, or store direct identifiers. Direct identifiers are details that can clearly identify you, such as your name, e-mail address et cetera.
 
LupusGPT does not store chat histories, whole conversations, or a sequential questions linked to you.
 
To help improve the tool, LupusGPT may keep limited information about questions people ask. For example, this may include one question, not linked to a person, when a keyword is detected or when LupusGPT is asked a question it cannot answer. This helps us understand what people are asking about, identify gaps in the tool’s information library, and can help us improve the tool and future lupus information.

Terms of Use for LupusGPT and EasyLupus

LupusGPT is a free, multilingual, patient-facing AI information tool. EasyLupus is its easier language feature. LupusGPT/EasyLupus are designed to provide general information about lupus from a curated library of reliable lupus sources. LupusGPT/EasyLupus are not designed to provide diagnosis, triage, emergency support, treatment recommendations, personalised medical advice, or clinical decision-making, and are not a substitute for advice from a qualified healthcare professional.

Users may use LupusGPT/EasyLupus for lawful, personal, educational, non-commercial, or charitable purposes. Users must not use the tool for emergencies. Users should not enter personally identifiable information or detailed personal medical information into any AI information tool, including LupusGPT/EasyLupus.

Some anonymous query or interaction information may be retained for quality improvement, safety monitoring, content-gap analysis, and tool improvement, as explained in our Privacy Notice. LupusGPT/EasyLupus do not ask users to provide names, email addresses, user accounts, or other direct identifiers.

Users must not, without prior written authorisation from Lupus Europe, attempt to access non-public parts of LupusGPT/EasyLupus including backend systems, APIs, databases, logs, prompts, configurations, source code, document chunks, vector stores, or infrastructure. Users must not probe, scan, test, reverse engineer, bypass, circumvent, scrape, harvest, compile, download, reproduce, disrupt, damage, modify, or extract data or technical information from the tool. Users must not use automated tools, scripts, crawlers, bots, LLM agents, or similar systems to access or analyse the tool outside ordinary use. Users must not impersonate Lupus Europe, its staff, volunteers, developers, or authorised technical personnel. Security researchers or other third parties must not commence or continue testing without written authorisation from Lupus Europe. Users must not use LupusGPT/EasyLupus in any way that is unlawful, harmful, abusive, or infringes the rights of Lupus Europe or any third party.

 

Lupus Europe welcomes good-faith reports of technical or security issues. If you believe you have found a vulnerability, contact us at  lupusgpt@lupus-europe.org  so we can assess the situation and take action. Do not access, copy, retain, transmit, publish, or share data or technical information beyond what is strictly necessary to report an issue, and do not commence or continue testing without written authorisation from Lupus Europe.

Lupus Europe may suspend, restrict, update, or discontinue LupusGPT/EasyLupus at any time for maintenance, security, safety, improvement, or operational reasons. Like any digital tool, uninterrupted, completely error-free, or fully up-to-date operation cannot be continuously guaranteed. 

LupusGPT/EasyLupus including their design, interface, prompts, curated library, databases, and technical architecture, are owned by or licensed to Lupus Europe and/or its technical team. Users may save or share individual answers for personal, non-commercial purposes, but may not extract, compile, reproduce, mirror, republish, or use tool content or outputs to build, train, or improve another product or service without written permission from Lupus Europe and its technical providers.

These Terms should be read together with the Privacy Notice, Cookie Policy, FAQ and Responsible use of AI information tools guidance.