Undiagnosed Diseases Network, USA, recruiting 16,000 patients to improve diagnosis and care

They have been recruiting patients since 2015 to improve diagnosis and care for people with undiagnosed diseases. Contact locations are listed at the bottom of the page.

Study Start Date : May 19, 2015

Estimated Primary Completion Date : December 31, 2028

Estimated Study Completion Date : December 31, 2028

 

"They" are the Undiagnosed Diseases Network. As I understand it, ME/CFS is diagnosable so wouldn't count for this?

 

We have no biomarkers, and if someone can have these tests done for free to eliminate other possible causes then I think they should. I'm not hanging my hook on Ron Davis on figuring it out.

 

The purpose of this study is to discover/further characterise rare genetic diseases...

 

I apologize for this, as it is a bit off topic
for this thread; just to clarify, since I seem to have missed it, those who have contacted the NIH for the NIH trial were diagnosed as having ME by ME/CFS clinician experts?

These patients were not diagnosed by non
ME/CFS clinician experts?

ETA: I checked the NIH website re patient participation requirements, and could not find mention of a requirement for ME expert clinicians to assess and diagnose prior to patients applying for the study.

 

My doctor did look into this program. She told me it was incredibly hard to get in to and they are very selective. If I remember rightly you cannot participate remotely as the program requires stay in the hospital.

 

@wigglethemouse do you recall when she told you this? They're in their 4th year of selecting people.

 

This was in 2016.

 

US citizens only?

 

to me, the question is not whether the program's internal rules require a given hurdle to be jumped (staying in hospital, for example). it is more whether such rules are /always/ completely necessary in every case, for the mission of the program. i.e. can a reasonable accommodation be made.

this isn't hypothetical. among the sickest cannot travel. it therefore directly impacts the mission if reasonable accommodations /can/ be made (such as running most but not all tests, allowing local tests, using open-tech-standards communications tech like email, etc.) but /are not/.

so it is not "merely" that it is potentially discriminatory, but that it is, /on top of "mere" discrimination/, potentially discriminatory toward those who could potentially contribute /the most/ to knowledge of rare diseases by being tested. /and/ toward many of those who potentially need it the most.

this is not to show ingratitude for the program. it is to point out that there is a population out there. they quite possibly do not know that!

===

pwme are manifestly systematically discriminated against, and this is widespread. very often it is institutional. for example, hospitals have no idea what they are supposed to do for pwme or they get it completely wrong from start (place to lie down for those who most need it) to finish (treatment that isn't "graded smirk therapy").

sometimes it is an oversight. nobody thinks "oh yeah, there is a sick population, with really serious problems, a huge percentage of which cannot travel, and a huge percentage of which are misdiagnosed! as OUR VERY MISSION is to pay attention to sick populations that need but are not getting correct diagnoses, we can consider making reasonable accommodations!"

in fact, they might not know anything accurate about m.e.

whether this program can provide reasonable accommodations, idk. but i think we should all get tired of being special exceptions, /even/ when those exceptions are oversights buried within rules in institutional settings. and /even when/ those rules seem normal for relatively healthy people or diseases popularly considered normal. i include all severity levels. as ben franklin said, we hang together or we hang separately.

 

Interesting. They had a number of profiles of patient cases listed on their site. I browsed through and there was one patient who had a lot of overlapping symptoms (exercise intolerance, POTS, muscle weakness, pain) to ME/CFS. They did not list what diagnosis she ended up with, and it appeared her treatments mainly addressed her symptoms in ways that we already know (beta blockers, pain medications, etc).

According to the site there have been several thousand applications. They do review all the applications, but not everyone is brought on to the next round. It seems like a very small fraction of those screened can be seen.

Although we don't have much information to go off of, I generally agree with @Hutan's point. The point about the NIH makes me wonder about other things a place like UDN could help rule out.