About the Discovery Feed

The Discovery Feed collects research, family stories, events and community news about Kleefstra syndrome (KS) from around the world, for families and clinicians. It is part of the Kleefstra World Map, which is run by IDefine, a nonprofit founded in 2020 by a group of parents.

The feed is a list of links, like a search engine. It only links to pages that are already public on the internet, and it shows a title and a short summary of each one. It never publishes stories of its own.

How items get into the feed

• Anyone can suggest a link with the “Submit” button on the feed page.
• IDefine’s team adds items it finds.
• Every day, an automatic search looks for new research papers (in OpenAlex) and news (in EventRegistry) that mention Kleefstra syndrome.

Nothing is published automatically. Every item waits for review until a member of IDefine’s team approves it, and an item can be taken down at any time.

What qualifies

An item qualifies if it is a real source that people in the KS community would benefit from. Each item gets one of three labels, and you can filter the feed by them:

• Directly KS related: KS is the main subject, such as a study of people with KS or a story about a family living with KS.
• Mentions KS: KS is mentioned but is not the main subject, even if it only comes up in passing, such as a paper that lists KS among possible diagnoses.
• Important for genetic diseases generally: KS is not mentioned, but the item is either major positive news for genetic conditions (a treatment that clearly worked) or clearly useful to KS families, such as research on EHMT1 and related genes.

The feed does not link to:

• pages where “Kleefstra” is only someone’s name;
• “on this day” or awareness-day lists that name the KS day among many others;
• content that local KS organisations judge to be wrong;
• a second copy of a story already in the feed.

Older papers and stories are welcome.

How we use AI

We use AI (OpenAI’s models) in three ways:

• For papers and news found by the automatic search, AI first checks whether the item is about KS. It then writes the short summary and picks the category and label. The title, date, link and source are copied exactly as published. AI can set aside items that are clearly not about KS, but it cannot publish anything.
• When reviewing a suggested link, our team can use AI to fill in its details from the page.
• AI translates the short text on each card (title, summary, source and label) into the site’s languages. Nobody checks these translations, and the linked page itself is not translated.

AI is told to write summaries in plain language, in at most 500 characters, using only the source’s own text. News summaries are written in English, and titles stay in their original language.

Report a problem or contact us

If an item is wrong, or a paper it links to has been retracted, please tell us with the “Feedback” button on the feed page or email [email protected]. We will correct the item or remove the link. You can use the same form for suggestions and requests.

The Discovery Feed is for information only and is not medical advice. Each linked page is the responsibility of its publisher. Talk to your doctor before making decisions about care or treatment.