Notes for Discussions 2021/7
Sarcoidosis in Children
This topic is a very frustrating one for me - for some reasons. I is really my personal fail.
I prepared already some visions on that subject before Dr. Nathan sent her manuscript.
While her text holds only a few places for me to discuss, there are some topics around, we should talk about.
But first the text, that's the easier game:
Phrase ... and children usually have 3-4 affected organs at diagnosis ...
Phrase In all cases, a child with pediatric onset sarcoidosis requires a long-term follow-up in a specialized center ...
I have heard rumors that there is an ongoing battle for many years between pulmonologists and rheumatologists in one of our neigbouring countries (but definitely not in Austria, because here these even talk to each other), what should be the primary or managing speciality for sarcoidosis. From plain numbers, there are 10 times as many active patients in the German rheumatologic registry but in the chILD registry - a network for pediatric sarcoidosis without rheumatologic partners is - at least for the situation in Germany - a subject of ignoring reality.
To be honest - here comes the origin of my frustration on that topic - I could not manage to encount enough reasons to cooperate at a video conference some time ago. My personal experiences with pediatric sarcoidosis are little and I am more than thankfull for that. Maybe Bernd with the Kindersarkoidose-Netzwerk has better reasons to request a multi-speciality cooperation - or I am simply wrong.
Last paragraph, phrase In most countries, sarcoidosis is included in children interstitial lung diseases (chILD) parents associations ...
If you do a Google survey, which clinical departments state to care for sarcoidosis in children, you will find much more often rheumatology but pneumology (esp. in the US).
And: a visible network cannot be a mail address.
The network and its activities have to be visible, to be worth the naming.
Second - and that's the not so easy part: I don't know how to proceed with that.
If anyone has a good idea how to incorporate also other specialities - I would give a coin for that.
Patient Charter
Another reason for shame: many years ago "we" did the IPF charter. In fact it was the common activity
which preceeded EU-IPFF founding. But - I cannot find any of the old texts anymore. Even the dedicated web page -
www.ipfcharter.org - is gone. It is now a shop for CBD oil. :- )
Nevertheless - the National Patient Charta of ILFA is a very good example,
of what has been created and been presented to the EU parliament in 2014.
Subsequent texts have been published in the ERJ
(European IPF Patient Charter (2015) followed by some comments:
European IPF Patient Charter: an SOS to the world (2015)
and European idiopathic pulmonary fibrosis Patient Charter: a missed opportunity (2016)).
In fact the "original" IPF charter has served some perpose and now it's gone, after it's job has been done.
Our discussion notes in the minutes of our last call by Jeanette were very comprehensive.
Chris - before we discuss your well done draft, we should discuss and specify, which perpose the charter would have and what the target audience would be.
Also, if there isn't anything else which will serve the perpose, but with less effort?
And - for instance - what happened with our plan of a lay interpretation of the guidelines?
And - are the medical wishes of a potential charter not covered by the requirements for WASOG sarcoidosis clinics
(FSR-video) and should we simply ask for WASOG clinics?
Last - please recognize. There are some big differences between the IPF charter and what we would do. The first one was done by a professional healthcare consultancy, together with all the advertising. And sarcoidosis isn't a lung disease with specialized, reimbursed medication.
Certification of WASOG clinics
FSR and - more and more - Sarcoidosis UK are the big players in sarcoidosis advocacy. I don't know and don't want imagine how our world of sarcoidosis would look like without them. Leo's close relation and cooperation with local hospitals showed us during the last few months how important local relations are and how fruitful they can be - for all of us. Great.
Long introduction - here is the case: Certification of WASOG clinics.
Clinics are certified by global players without (a need of) incorporation of local patient groups (as far as I know, please prove me wrong).
This is a bad situation. Another problem with WASOG clinics is, that their qualification and activities are not transparent
(at least not for me - there is no annual activity report or something else)
and that there is no need to share and compare their registry data with other clinics.
We should think about alternatives or opportunities of participation and change.