Requesting the full research document
The untried treatment combinations are not published openly. Here is why, and how clinicians and researchers can ask for them.
Why this part is not on the site
The research behind these pages includes several treatment combinations that have never been tried together in SSPE. They are reasoned from published work, but reasoned is all they are: no one has tested them, and nothing in them should reach a patient without ethics-committee approval and a protocol.
Set out on an open web page, that material would be read by the families of dying children as readily as by clinicians — and in a disease with no cure, a list of things that have not been ruled out reads very easily as a list of things to ask for. So it is available on request instead, to people positioned to act on it properly.
Everything else is open. What each group has achieved, what the evidence supports today, how a registry would be built, and the full source list are all on this site, free and unrestricted.
Who it is for
- Paediatric neurologists and neurologists managing SSPE patients
- Infectious-disease and virology researchers working on measles or persistent CNS infection
- Research ethics committees and institutional review boards assessing a related protocol
- Groups running or planning an SSPE registry or trial
What to include in your request
Tell us:
- Your name, post and institution
- A line on your interest — a patient under your care, a protocol in development, a registry, a review
- Whether you want the candidate combinations, the graded evidence tables, or both
We reply with the document and the full source list. There is no charge and no condition attached beyond the obvious one: it is hypothesis-generating work, and it should be described that way in anything that cites it.
The request form is not connected yet
Until it is, send the three items above by message to @paeds.with.drsana on Instagram and we will reply with the document.
What you will receive
The full research document: every published SSPE treatment attempt we could locate, what each research group achieved, the evidence graded from A to D, the combinations that have never been tried, and a registry and regulatory plan. Each source carries the same provenance tag used across this site, so you can see at a glance which claims rest on a paper somebody read and which rest on an abstract.
It records its own corrections too, including places where reading the full text reversed what we had previously concluded.