Our data, together: why we want a patient-built RET registry

In short: Each of us, patients with RET-positive cancer, holds a treasure: our own data – the genetic test, the treatments, the response, the side effects, the progression. Put together, this data would answer the questions that keep us up at night. Today it sits fragmented: part of it in institutional registries we cannot access, part of it in our own drawers. Other patient communities solved this problem by building their own registries – and changed the research on their disease. We believe it is time for the RET community to do the same. This article explains why, what we propose concretely, and how you can register your interest. Nothing is being collected yet – first we want to know how many of us there are.

The problem: the information exists, but it does not circulate

Our disease is rare – RET fusions occur in 1-2% of lung cancers. That means no hospital, no city, often no country sees enough patients to learn quickly. The only way to learn quickly is to pool the data.

The good news: pooling already exists, partially. International academic registries – for example the Global RET Registry (GLORY) or the European RET-MAP registry, from which valuable analyses have been published – gather data from dozens of hospitals. We are grateful to those who built them: without them we would know far less.

The bad news, said with all due respect: for the patient, this system is opaque. Hospitals decide whether they contribute and what they contribute – often only part of the genetic data of each case. Results appear years later, compressed into a few slides at conferences you have to hunt down on social media. And if a patient asks “how long, on average, does the response to treatment last for someone with exactly my fusion?” – there is nowhere to ask that question. There is no mechanism through which a patient can query the registries built, in part, from the data of patients like them.

The European Union has already recognized the problem: the European Health Data Space (EHDS) , in force since 2025, will gradually create the right of access to anonymized health data for secondary use. But full implementation is scheduled toward the end of the decade. Some of us do not have that kind of time.

The questions that keep us up at night – and that no one can answer today

Be honest: how many of these have you asked yourself, at 2 a.m., after a scan?

• How long does selpercatinib actually last for someone with my exact fusion partner and my co-mutations? Not the trial average – my configuration. Today, no doctor on Earth can answer that, because the data to answer it has never been put in one place.
• When my treatment stops working, what did the patients who were exactly where I am do next – and how did it go? Hundreds of RET+ patients have already crossed that bridge. Their experience exists. It is just not written down anywhere you or your oncologist can read it.
• Are my side effects normal? How many of us reduced the dose – and did the response hold? Every one of us negotiates this alone with their oncologist, as if no one had ever done it before.
• Which resistance mechanism should I be watched for, given my fusion? Somewhere out there is probably a patient with your exact profile, twelve months ahead of you on the same road. Right now, the two of you have no way to learn from each other.
• When a researcher decides what to study next in RET, whose questions are on the table? Not ours – because ours have never been collected.

If a registry of a few hundred of us existed, none of these would be unanswerable. That is the whole argument, and it fits in one sentence: the answers exist, scattered across our lives – they just have never been added up.

And to the most skeptical among us – the ones thinking “my one case won’t change anything”: in a disease this rare, the opposite is true. When the worldwide pool of comparable cases is measured in hundreds, one patient is not a rounding error – one patient is a percentage point. Rare disease math is the one place where a single “count me in” genuinely moves the needle.

Proof that it can be done: the patients who already did it

We are not proposing a utopia. We are proposing to copy, honestly, what worked for others:

• EGFR Resisters – a community of patients with EGFR+ lung cancer, started from a Facebook group. Through Project PRIORITY , patients directly donated their clinical and genomic data, with consent, for research – including in partnership with industry. The result: published studies, patients’ questions placed on researchers’ agendas, and a community that no longer waits to be studied – it studies itself. And the results flow back to the community: the public EGFR Data Explorer dashboard shows anyone what was learned from the donated data.
• ACCELERATE (Castleman disease) and FibroRegistry (fibrolamellar liver cancer) – two of the strongest patient-driven stories in medicine: ACCELERATE , the registry founded by a patient-physician, hit its 5-year enrollment target in just 2 years and contributed directly to finding a repurposed treatment; FibroRegistry was founded by a patient who, as a teenager, co-discovered the very driver mutation of her own disease – and the patient- and family-governed registry has already produced published scientific papers.
• The ROS1ders and ALK Positive – communities built precisely around rare drivers, like ours, which went from support groups to funding their own research and data programs: ALK Positive has committed over $10 million to research since 2017 and has a scientific advisory board of 12 leading oncologists, and The ROS1ders created 9 new cell lines – doubling the worldwide supply available to researchers.
• NORD IAMRARE and RARE-X – proof that this model already has mature infrastructure: the IAMRARE program of the US National Organization for Rare Disorders hosts over 40 registries led by patient organizations, with thousands of participants, and RARE-X (Global Genes) built a platform where the data stays owned by the patient, with individually chosen sharing options – exactly the granular consent model we are proposing.

The pattern is identical everywhere: a rare disease, fragmented data, slow institutions – and patients who decided that speed matters more than inertia. All of them did it legally, with explicit consent, without violating anyone’s confidentiality.

What we propose: a community RET registry

The OncoGuide Association – a non-profit patient organization, legally registered in Romania, which runs this site – is committing to build the infrastructure: an online registry of RET+ patients, made by patients, for everyone.

The principles, non-negotiable:

1. Voluntary, entirely. Only those who want to contribute do, as much as they want. Anyone can withdraw at any time, and their data is deleted on request.
2. Explicit and granular consent. Each participant decides separately: can the data be used for public statistics? for academic research? can it be shared with pharmaceutical companies developing treatments for us? Each “yes” is ticked individually, nothing is assumed.
3. Real pseudonymization. Identity and consent are kept separately and privately. In the registry and in any public statistic, a participant is “RET-0042” – never a name, never a combination of details that could identify someone in a disease this rare. Anonymization is not a checkbox – it is a craft, and we treat it as one.
4. Protected under GDPR, wherever it is processed. Before you consent, you are told exactly who processes your data and where. Any transfer outside the EU rests on a named GDPR safeguard. GDPR is not the obstacle here – the patient’s explicit consent is exactly the mechanism GDPR provides for this.
5. Open access to results. The aggregate statistics – how many of us there are, which fusions we have, how long responses last, what comes after progression – will be public, for patients, doctors and researchers alike. That is the whole point: for all of us to run faster.

Correction (2 September 2026): this principle originally promised that data would be hosted in the EU. We withdrew that promise so the registry can use the best available tools (including AI providers that process data outside the EU under GDPR safeguards). What does not change: GDPR applies to every step, and you are told exactly who processes your data and where, before you consent.

What data would matter

To be useful, the registry would gather, from those who choose to contribute: the diagnosis and its date, the RET fusion with its partner (KIF5B, CCDC6…) and the co-mutations from the genetic report (ideally the report itself, as a document), the treatments in order – what, from when, until when –, the response to them, the significant side effects, the local treatments (radiotherapy, ablation, surgery), the time and manner of progression, and what followed. Simply put: each person’s medical story, in a comparable format.

We know from our own experience how valuable every item on that list is – because these are exactly the questions we ask ourselves at every treatment decision.

Partner, not rival

We see the community registry as a partner of the academic registries, not a rival – and we will work transparently with researchers as this effort takes shape. The data patients collect – adherence, real-world side effects, the decisions between treatment lines – is exactly what hospital registries lack. We invite any academic group that wants to collaborate to write to us.

And the same goes – even more so – for the patient communities that already hold this ecosystem together: RETpositive, the RET Renegades, the national lung cancer groups, the forums. The registry is not a new organization competing for members – it is shared infrastructure, offered to all of them. Concretely: any patient community that joins gets a voice in the registry’s governance, the aggregate results to power its own advocacy and research agenda, and full credit for what its members contribute. Your groups have the trust and the reach; we are building the plumbing. To the international RET patient communities we propose explicitly: let’s build this together, not in parallel – under your umbrella, if that is what it takes.

We are getting to work – and this is only the beginning

This article is the intro, not the whole plan. In the coming days we will publish here, step by step: the interest sign-up form, the exact list of data we will ask for, the consent form, and what the registry will look like. We are building in public, so you can see every decision and challenge it.

Until then, only one thing matters: finding each other. Every patient who raises their hand now makes the registry more valuable for everyone else.