Talk:Birt–Hogg–Dubé syndrome

Quick mid-development review
Keilana asked me to look through this article and make some comments.

Sourcing
Sourcing
 * Happle 2012 - It's an editorial, not a fan of using editorials like this, why not just use this from the NIH for the alternate names?
 * Done, added Hornstein-Knickenberg syndrome and fibrofolliculomas with trichodiscomas and acrochordons as those were also given as alt names by the NIH. Keilana&#124;Parlez ici 19:28, 18 July 2013 (UTC)


 * James 2006 - This is the 10th edition from 2006, per WP:MEDDATE that's a bit old, can you update this source to the 11th edition from 2011?
 * Done. Keilana&#124;Parlez ici 19:38, 18 July 2013 (UTC)


 * Toro 2008 50 families - good
 * NIH GHR 2013 - ok
 * Birt 1977 - ok for historical
 * NORD - I'm unsure about the quality of this source. NORD is a small charity organization, appears unaffiliated with any academic or major medical institution, and the article was written by one researcher, probably not peer-reviewed.  If you can't replace the source, ask at WT:MED and see what they say about it.
 * Okay, I've removed or re-cited all the material that was cited to NORD. Keilana&#124;Parlez ici 20:36, 26 July 2013 (UTC)


 * Toro 2008 GeneReviews - excellent
 * Furuya 2013 - I think it's OK? Not PUBMED indexed yet apparently, and it's been out long enough that I'd expect it to have a PMID, why doesn't it?
 * Hmm, I found it on PUBMED and it's indexed in MEDLINE. The PMID is 23223565, I've put that in the citation. It's labeled as a review so I believe it qualifies under MEDRS. Keilana&#124;Parlez ici 20:39, 26 July 2013 (UTC)
 * Yes, no explanation as to why I didn't find it before! But there it is, MEDLINE-indexed and associated with the BMJ, a fine source.    21:10, 26 July 2013 (UTC)
 * Awesome, thanks! Keilana&#124;Parlez ici 21:12, 26 July 2013 (UTC)


 * Nickerson 2002 - ok for historical
 * Klomp 2010 - primary source, can this information be sourced to a secondary source?
 * Okay, replaced with a Feb. 2013 review that covered this in pretty decent detail. (Sudarshan et al.) Keilana&#124;Parlez ici 20:50, 26 July 2013 (UTC)
 * Sudarshan looks good.  21:16, 26 July 2013 (UTC)


 * Liu 2013 - primary source, can this information be sourced to a secondary source?
 * Yes, it was covered in a review which is now cited. Keilana&#124;Parlez ici 20:17, 26 July 2013 (UTC)


 * Baba 2006 - primary source from 2006, surely this information has been incorporated into a review article since then?
 * Taken care of. Keilana&#124;Parlez ici 21:00, 26 July 2013 (UTC)


 * Nookala 2012 - primary source
 * Taken care of. Keilana&#124;Parlez ici 21:00, 26 July 2013 (UTC)


 * Linehan 2007 - a bit dated, ideally update to newer secondary source
 * Updated to Menko 2009. Keilana&#124;Parlez ici


 * Menko 2009 - good
 * Medscape has been the subject of debate as to whether it's a reliable source per WP:MEDRS or not, you should probably find a different source for the content
 * I've found the original articles cited by the Medscape author here and here. The first one is a very recent paper and hasn't been cited in any reviews yet. The second paper has been cited in reviews but none of the reviews have mentioned smoking history as causing worse outcomes for BHD, just that smoking causes emphysema and such, which can mask the pulmonary BHD phenotype. What do you think I should do here? I'm not sure. Keilana&#124;Parlez ici 21:00, 26 July 2013 (UTC)
 * This is a good one to go ahead and ask about at WT:MED. I generally avoid Medscape but you may find other opinions there.   21:21, 26 July 2013 (UTC)
 * Okay, I asked over there. I'll see what they say - I'm still new to medical editing and haven't quite absorbed all of the new guidelines. Keilana&#124;Parlez ici 21:30, 26 July 2013 (UTC)


 * Burnier 1927 - ok for historical
 * OMIM - ok
 * BHD Foundation - primary source for itself, should have secondary source to establish its noteworthiness
 * NORD recognizes it and Home Genetics Reference does as well. Keilana&#124;Parlez ici 16:23, 25 July 2013 (UTC)
 * Yep I think this mention at the NIH GHR is good enough of an independent secondary source to support the mention, good find.  16:43, 25 July 2013 (UTC)

In general for well-studied subjects we do not want to be using primary sources. Are any of the primary sources used really necessary, can the information be sourced to secondary sources, or simply eliminated from the article?
 * I think I've taken care of all these concerns. Do the sources look okay? (ping) Keilana&#124;Parlez ici 04:08, 15 August 2013 (UTC)
 * Just about to head to bed, remind me in a day or so if I haven't responded...   04:22, 15 August 2013 (UTC)
 * Sleep well, you're wonderful. :) Keilana&#124;Parlez ici 04:45, 15 August 2013 (UTC)
 * I checked to make sure the problematic sources were removed and that the new ones added are up to WP:MEDRS standard. Sourcing looks great now!  Fine work.  I'd be surprised if you got many complaints at all about the sourcing for this article as a GA nominee.    16:56, 15 August 2013 (UTC)


 * Diberri note -- In case you haven't seen it yet, all the cool people who mess around with biomedical sourcing generally use the Diberri template filler tool, located here. You supply it a PMID and it fills in all the required fields, copy-and-paste, done.  It seems to be the standard (to the degree anything on Wikipedia can have a standard) template filler for things with PMIDs.  I did a few in the article today.  Not critical for GA but the ref cites would need to be standardized for FA.   17:15, 15 August 2013 (UTC)
 * I've been trying to use it but it's always down. :( The next time it's up I'm going to get all the refs in a row! Keilana&#124;Parlez ici 18:57, 15 August 2013 (UTC)

General comments

 * The prose is uneven and opaque in many places. The information is in there but it's hard for a typical lay reader to access - this is pretty important.  Consider your audience to be a bright 15-year-old with no medical training.  Would such a reader be able to access the information the article is trying to communicate?  Yes, a lot of this information is based on specialist knowledge, but even so, organize the paragraphs of your sections so that the first paragraph is a very accessible overview that doesn't overwhelm with heavy technical detail, and then the following paragraphs in the section can build on that.  This allows the reader not so interested in slogging through heavy technical detail to get the gist from the first paragraph and then skip to the next section.
 * I think this is better. I'll see what the GA reviewer says and either get a copyeditor before GA or after. Keilana&#124;Parlez ici 03:20, 20 August 2013 (UTC)


 * "Birt-Hogg-Dubé" is repeated a lot, consider using "BHD" sometimes or look for ways to use pronouns to refer to it
 * I've gone through an gotten rid of as many as I could. Keilana&#124;Parlez ici 03:28, 20 August 2013 (UTC)


 * Try to have a consistent "in-line explainer" style. Sometimes it's with hypens - short horizontal dashes.  Sometimes it's in parentheses (a pair of curved lines).  Doesn't matter which you pick but I find it a little jarring to see different styles used.  This is a small nitpick.
 * Think I caught them all! Keilana&#124;Parlez ici 03:28, 20 August 2013 (UTC)


 * The info about mosquitoes and dogs should probably be moved to its own section "Other animals" per WP:MEDMOS.
 * Did this, and found a couple more animals to add to the mix. :) Keilana&#124;Parlez ici 21:01, 26 July 2013 (UTC)

Section-by-section comments

 * Lead needs expansion, although I don't often bother writing the lead until the body is done, maybe you're doing the same thing.
 * That's how I work too, it's expanded quite a bit now. Keilana&#124;Parlez ici 20:38, 17 August 2013 (UTC)


 * Epidemiology doesn't need It was first described in 1977. in it, that's already in History where it should be.
 * Removed from Epidemiology. Keilana&#124;Parlez ici 21:02, 26 July 2013 (UTC)


 * Could use general copyediting for clarity and simplicity. Clarity can be improved by splitting up run-on sentences, example These growths typically first appear in a person's twenties or thirties and are found in more than 80% of people with the syndrome after this age[2] and become larger and more numerous over time.
 * I'll have a go at it. Is there anyone in particular you'd recommend as a copyeditor? Keilana&#124;Parlez ici 21:19, 26 July 2013 (UTC)
 * I just finished a chunk of work and might have a go at some copyediting if that'd be OK with you. I'm not the best copyeditor I know but I can be helpful.   21:23, 26 July 2013 (UTC)
 * Well I had intended to try to do some copyediting but, well, didn't. Sorry!  I had a hard time internalizing the content so that I could re-present it in the desired kind of prose, and I couldn't develop the enthusiasm for really digging into the sources.  But it does look like you've made some good strides in making the information more accessible.  As always you can ask for help at WT:MED. Also I know there's the WP:GOCE although I haven't tried asking there before, and it'd be interesting if you can find someone there willing to take on a technical article like this.  It'd be ideal to find someone with particular expertise in genetic diseases but I can't think of anybody offhand.  What you might consider doing is finding a similar GA or FA quality article and find out who brought it up to that standard, and then asking that editor.    17:08, 15 August 2013 (UTC)
 * It's totally okay! No worries! I went through it myself and I'll see what the GA reviewer I get says. :) Keilana&#124;Parlez ici 05:29, 19 August 2013 (UTC)


 * Women and people who experience a late onset of skin symptoms tend to have less severe phenotypes. - are women not people? This is a bit unclear what populations are being discussed here.
 * Not sure how to make it clear that there are two separate things associated with less severe phenotypes - being female and having a late onset of skin symptoms. Maybe "Less severe phenotypes are seen in women and people of both sexes who have a late onset of skin symptoms"? Keilana&#124;Parlez ici 21:04, 26 July 2013 (UTC)


 * Birt-Hogg-Dubé tumors differ on an individual basis; - meaning between individual tumors or between individual people? This part of the sentence probably should be ended with a colon (to set off a list) as opposed to a semicolon.
 * Individual people. I think it's clarified now. Keilana&#124;Parlez ici 21:07, 26 July 2013 (UTC)


 * A large number of tumors on the face can be associated with hyperseborrhea, abnormally elevated sebum production. - probably "abnormally elevated sebum production" should be put in parethesis as an in-line explainer, instead of after a comma?
 * Done. Keilana&#124;Parlez ici 21:10, 26 July 2013 (UTC)


 * People over 20 ... add "years of age"
 * Done with a couple other instances. Keilana&#124;Parlez ici 05:47, 19 August 2013 (UTC)


 * over 30% of people with Birt-Hogg-Dubé syndrome develop kidney tumors, though estimates range from 15%-30%. - this disagreement between the sources needs to be handled more elegantly
 * Reworded to "Estimates of the incidence among people with the disease range from 14%–34%". Keilana&#124;Parlez ici 05:49, 19 August 2013 (UTC)


 * Though pneumothorax in Birt-Hogg-Dubé patients - per WP:MEDMOS we try to avoid "patient"
 * I think I got all of them. Keilana&#124;Parlez ici 06:40, 19 August 2013 (UTC)


 * "Clinical Triad" section - the actual triad of cutaneous manifestations, lung cysts/spontaneous pneumothorax, and renal tumors should be highlighted more clearly. Each numbered item should start with the words naming the triad item.  The way it's done now, the information is getting a bit buried in detail.  I'm not a fan of lists like this in articles anyway, see WP:USEPROSE.  Consider eliminating the numbered list altogether, although that's just my preference.
 * I've made it prose and I think the triad is pretty clear. Keilana&#124;Parlez ici 06:40, 19 August 2013 (UTC)


 * History - need to explain who Hornstein and Knickenberg were and why they were important.
 * Done. Keilana&#124;Parlez ici 03:16, 20 August 2013 (UTC)


 * The BHD Foundation supports research into BHD syndrome and holds regular symposia in BHD and related disorders for researchers, clinicians, and family members. - a secondary source is really needed to demonstrate that the BHD Foundation is noteworthy enough for mention here.
 * Taken care of above. Keilana&#124;Parlez ici 03:16, 20 August 2013 (UTC)


 * Images seem appropriate and properly licensed. More would be nice.
 * I've added a few more. Keilana&#124;Parlez ici 05:58, 19 August 2013 (UTC)

Overall it's coming along nicely and you should be proud of your work! Looking forward to seeing this show up in the GAN queue, let me know if you want any more feedback from me or have any questions. 02:12, 18 July 2013 (UTC)
 * Thanks so much Zad, I'll keep plugging away! If I have questions I'll hunt you down. :) I am so very grateful for the review! Best, Keilana&#124;Parlez ici 15:57, 18 July 2013 (UTC)


 * some families with FLCN mutations develop only kidney tumors or spontaneous pneumothorax - "FLCN mutation" hadn't been mentioned up to this point, need to explain what it is and why it's important/relevant before using it
 * Rewrote for clarity. Keilana&#124;Parlez ici 03:19, 20 August 2013 (UTC)

Article title - dashes vs. hyphens
The current article title is Birt–Hogg–Dubé syndrome with – dashes instead of - hyphens. Shouldn't the article title have keyboard-friendly hyphens instead of the dashes? If there's no objection I'd like to move the article to a title with hyphens instead of dashes. 01:30, 19 July 2013 (UTC)
 * I would prefer that, is there anything in WP:MOS or WP:MEDMOS that prevents it? If there is then I suppose the redirect works... Keilana&#124;Parlez ici 21:15, 19 July 2013 (UTC)
 * Are you saying you'd like the article title to keep the en-dashes in it? I'll have to find it in the guidelines but I'm pretty sure  characters that are easily typed on a normal keyboard are preferred for titles, especially if a trivial substitution can be made, like a hyphen for an en-dash.  This is pretty low on my list of priority items but I thought I remember seeing it somewhere in the WP:MOS, I'll see if I can find it.   16:31, 25 July 2013 (UTC)
 * No, I think the hyphens is easiest! Sorry that came across wrong. I'll move it and deal with the redirects today. Keilana&#124;Parlez ici 16:34, 25 July 2013 (UTC)
 * OK! I just saw WP:TITLESPECIALCHARACTERS, and it doesn't directly address it, it just says if the best title does have non-keyboard-typeable characters, use a redirect...    16:38, 25 July 2013 (UTC)
 * Awesome, moving it seems to make the most sense. :) Now on to dealing with MEDRS compliance... Keilana&#124;Parlez ici 16:40, 25 July 2013 (UTC)
 * No! I have just come across this discussion. Please see my comments at WT:MED. Axl  ¤  [Talk]  10:02, 27 July 2013 (UTC)
 * No? Argh, sorry. :( I saw you moved it, is it sorted? Keilana&#124;Parlez ici 16:41, 27 July 2013 (UTC)
 * The article title is fine now. So is the lead section. There are still several places in the text where the dashes need to be fixed. Axl  ¤  [Talk]  16:52, 27 July 2013 (UTC)
 * Just went through it with the dash script and advisor.js. Does it look okay now? Keilana&#124;Parlez ici 17:54, 27 July 2013 (UTC)
 * Thanks for catching and fixing my fork-up, Axl.
 * You're welcome. :-) "Birt–Hogg–Dubé" has been fixed throughout. However the abbreviation "BHD" is used in various places. This should be standardized. I fixed a couple of eponymous syndrome names in the "Differential diagnosis" subsection ("von Hippel–Lindau" and "Ehlers–Danlos"). The "Pathophysiology" section has spaced emdashes, which are incorrect. Axl  ¤  [Talk]  22:38, 30 July 2013 (UTC)
 * Thank you so much! I'm really bad with little formatting things. What should we use in "Pathophysiology" (and how do I type it? :P)? Keilana&#124;Parlez ici 14:30, 31 July 2013 (UTC)
 * The dashes should be either unspaced emdashes or spaced endashes. (The subsection "Skin" uses unspaced emdashes, so this would be preferable for consistency.) I use  to insert an emdash, or you can use the "Wiki markup" box at the bottom of the editing window to insert one.  Axl  ¤  [Talk]  18:26, 31 July 2013 (UTC)
 * That's wonderful, thank you! I'll run along and implement it now. Keilana&#124;Parlez ici 23:28, 31 July 2013 (UTC)
 * I have fixed the dashes. Axl  ¤  [Talk]  09:20, 2 August 2013 (UTC)
 * I'm a dipshit and forgot. Thanks for picking up after me! ;) Keilana&#124;Parlez ici 15:59, 2 August 2013 (UTC)

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Remove Patient Registry section? Comment Suggestion
The section near the end of this article on the NIH patient registry is short and specific only to the US; it is also non-specific to this particular condition and would apply to any rare lung diseases. Would it be appropriate to just remove the section? Myoglobin (talk) 13:41, 27 February 2022 (UTC)