7
$\begingroup$

I was recently reading Christof Koch's The Quest for Consciousness, and several times he mentioned how important some patients with sad and terrible brain injuries were for the understanding of the working of the brain.

It made me wonder how brain researchers as Koch and others find such patients. I expect that only a small number happen to see an expert-brain researcher who understands that this patient could be important for brain research, especially for such people in less developed countries.

More generally, I wonder the same for patients with very rare injuries or diseases, which could potentially be significant for medicin- and biology-research:

Is there a global database for patients with very rare deseases or injuries, making it possible for medical experts in the field to find them?

Even if the expert can not help the individual person, I imagine that such patients could be very important for future understanding/curing of the injury/disease. I hope to get some literature references or suggestion.

$\endgroup$
  • 1
    $\begingroup$ Are you aware of the concept of medical confidentiality? If not, you might find it instructive to read bma.org.uk/advice/employment/ethics/…. Then perhaps you will realize why the answer to your question is no. $\endgroup$ – David May 1 '17 at 22:33
  • 3
    $\begingroup$ @David Thank you, but your answer is not complete I believe. 1., such lists could be created when the patients or their relatives agree. 2., somewhat related lists do certainly exist, such as for organ transplantations. 3. I know that several very rare cases have been well-documented in medical literature, so your argument do you apply there either. But I see your point, and it gives some necessary conditions for what I was wondering about. Thank you. $\endgroup$ – NicoDean May 1 '17 at 23:05
  • 2
    $\begingroup$ I guess the closest you can get to this are collections of case reports. Where, if you were extremely interested, you could contact the author of the case report and if you are lucky get in contact with the patient. $\endgroup$ – skymningen May 3 '17 at 8:27
  • 1
    $\begingroup$ The Undiagnosed Diseases Network (undiagnosed.hms.harvard.edu) is similar to what you're looking for; it's not for injuries, but rather for rare genetic diseases. @David: there are well-established procedures for getting informed consent. $\endgroup$ – Raghu Parthasarathy Aug 13 '17 at 18:56
  • $\begingroup$ @RaghuParthasarathy — if you have an answer to a question please post it as an answer. Comments are intended for asking clarification or making suggestions to the poster, as you will have seen when you clicked in the comment box. $\endgroup$ – David Aug 13 '17 at 19:21
4
$\begingroup$

The MatchMaker exchange project is a federated approach that allows clinicians to find matching cases based on genetic or phenotypic similarity, retaining patient confidentiality.

$\endgroup$
4
$\begingroup$

The Undiagnosed Diseases Network is similar to what you're looking for; it's not for injuries, but rather for rare genetic diseases.

$\endgroup$
0
$\begingroup$

I don't know whether there's a global database of the sort you're thinking of, but Crowdmed.com is a website on which patients post their own obscure medical cases and post a bounty for researchers to try to solve them.

$\endgroup$

Your Answer

By clicking “Post Your Answer”, you agree to our terms of service, privacy policy and cookie policy

Not the answer you're looking for? Browse other questions tagged or ask your own question.