This article is rated B-class on Wikipedia's
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Ideal sources for Wikipedia's health content are defined in the guideline
Wikipedia:Identifying reliable sources (medicine) and are typically
review articles. Here are links to possibly useful sources of information about Epilepsy-intellectual disability in females.
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FYI - I'm doing my best to copy edit and organize this article, but it still has a way to go, particularly since I think a lot of the content was translated from a foreign language and the points have become muffled.
I am hoping that once I start getting to finding missing sources that may help a lot.
Anyone in the medical field, though, that can shed light on this would be greatly appreciated. I'm hoping adding the project templates will help with that. (I've been in the medical field on the administrative / operations / claims side so know just enough...)-- CaroleHenson ( talk) 19:55, 29 December 2011 (UTC)
This topic seems complicated by a couple of things:
It would be interesting to get a viewpoint about this from someone in the medical field. In the meantime, I pared the information down a bit to what seems most germaine.-- CaroleHenson ( talk) 20:27, 30 December 2011 (UTC)
The result of the move request was: No move. This request effectively became meaningless once the title of the article was moved back to its original title. Per WP:BRD, the move back should have probably been carried out before the move request anyway. If any of the participants feel strongly that either of the titles Epilepsy in females with intellectual disability or Juberg-Hellman Syndrome are more appropriate than this one, I suggest they open a new move request that can be assessed unambiguously. ( non-admin closure) — Amakuru ( talk) 14:08, 2 December 2013 (UTC)
Epilepsy in females with intellectual disability →
Juberg-Hellman Syndrome – This page was recently moved from a rather offensive name used in the literature to one that I can't find anywhere. The name "Juberg-Hellman Syndrome" is used, however, and I suggest that the page should be moved to that name.
Sminthopsis84 (
talk) 19:51, 22 November 2013 (UTC)
The current name of this syndrome "Epilepsy in females with intellectual disability" is an invention of Wikipedia and does not appear in the literature. The article should be at Epilepsy and mental retardation limited to females which seems to be the most common form in recent literature. Other popular variants are Epilepsy in females with mental retardation and Epilepsy limited to females with mental retardation. The literature uses the abbreviation EFMR regardless of which long-form is used. The term "Juberg-Hellman Syndrome", in respect to the first doctors to described it, doesn't seem to have caught on (it is only ever used as an alternative in parenthesis). Various parent charities seem to prefer "PCDH19 Female Limited Epilepsy" because it avoids the dreaded "Retardation" word and it makes it sound like we know the cause (the PCDH19 gene). However, the field appears to be in a state of flux and it isn't clear whether PCDH19 is linked to other epilepsies. Nor is the abbreviation FLE used by these charities a wise choice as "Frontal Lobe Epilepsy" got here first.
Wikipedia can't rename a syndrome just because it uses words terms we dislike. I think Epilepsy and mental retardation limited to females is a better choice than the original Epilepsy in females with mental retardation, even though the original matches up better with the EFMR abbreviation. We should follow the best literature practice here and that name appears to be current favourite. Perhaps in future the naming will become clearer. This is far from alone among epilepsy syndromes in having multiple names and genetics is only starting to help with classification, which remains complex. There isn't a one gene = one syndrome pattern, unfortunately. Colin° Talk 21:17, 22 November 2013 (UTC)
Juberg-Hellman Syndrome seems to be a practical alternative, and would provide time for the researchers and academics time to adjust, to legally comply and to use acceptable teminology. dolfrog ( talk) 14:08, 23 November 2013 (UTC)
The new name had zero refs in the literature. I have restored it to the previous name where there is at least some refs. We do not get to invent new names. Wikipedia is not here to invent new knowledge but to simply reflect sources. What is with "legally comply and to use acceptable terminology"? Doc James ( talk · contribs · email) (if I write on your page reply on mine) 22:45, 23 November 2013 (UTC)
{{
cite web}}
: CS1 maint: multiple names: authors list (
link) and
"Online Mendelian Inheritance in Man® An Online Catalog of Human Genes and Genetic Disorders"..The issue was "Epilepsy in females with intellectual disability". There is a big move away from naming conditions after people. Thus I am not sure I agree with the Juberg Hellman syndrome. I am happy with whatever the ICD uses. Doc James ( talk · contribs · email) (if I write on your page reply on mine) 23:18, 23 November 2013 (UTC)
Moved back from "Epileptic Encephalopathy, Early Infantile, 9" We need discussion first. There was no consensus per the above. Doc James ( talk · contribs · email) 04:57, 1 January 2015 (UTC)
Yes OMIM gives
Likely the second one. Doc James ( talk · contribs · email) 13:50, 1 January 2015 (UTC)
Recent literature is starting to shift away from the current name, “Epilepsy-intellectual disability in females”, which is used on Wikipedia. I would like to propose changing the Wikipedia page title to “PCDH19-related female-limited epilepsy” or “PCDH19 gene-related epilepsy”.
Please find below a breakdown of where I have observed the shift to “PCDH19-related female-limited epilepsy” and/or “PCHD19 gene-related epilepsy” – which started shortly after the PCDH19 gene was discovered in 2008.
Primary Medical Literature Sample:
Secondary Medical Literature Sample:
Patient Registry:
International Medical Conferences:
Government Organizations Recognition:
Non-Profit Advocacy Organizations:
Djahmei ( talk) 20:49, 20 December 2016 (UTC)
This article is rated B-class on Wikipedia's
content assessment scale. It is of interest to the following WikiProjects: |
||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Ideal sources for Wikipedia's health content are defined in the guideline
Wikipedia:Identifying reliable sources (medicine) and are typically
review articles. Here are links to possibly useful sources of information about Epilepsy-intellectual disability in females.
|
FYI - I'm doing my best to copy edit and organize this article, but it still has a way to go, particularly since I think a lot of the content was translated from a foreign language and the points have become muffled.
I am hoping that once I start getting to finding missing sources that may help a lot.
Anyone in the medical field, though, that can shed light on this would be greatly appreciated. I'm hoping adding the project templates will help with that. (I've been in the medical field on the administrative / operations / claims side so know just enough...)-- CaroleHenson ( talk) 19:55, 29 December 2011 (UTC)
This topic seems complicated by a couple of things:
It would be interesting to get a viewpoint about this from someone in the medical field. In the meantime, I pared the information down a bit to what seems most germaine.-- CaroleHenson ( talk) 20:27, 30 December 2011 (UTC)
The result of the move request was: No move. This request effectively became meaningless once the title of the article was moved back to its original title. Per WP:BRD, the move back should have probably been carried out before the move request anyway. If any of the participants feel strongly that either of the titles Epilepsy in females with intellectual disability or Juberg-Hellman Syndrome are more appropriate than this one, I suggest they open a new move request that can be assessed unambiguously. ( non-admin closure) — Amakuru ( talk) 14:08, 2 December 2013 (UTC)
Epilepsy in females with intellectual disability →
Juberg-Hellman Syndrome – This page was recently moved from a rather offensive name used in the literature to one that I can't find anywhere. The name "Juberg-Hellman Syndrome" is used, however, and I suggest that the page should be moved to that name.
Sminthopsis84 (
talk) 19:51, 22 November 2013 (UTC)
The current name of this syndrome "Epilepsy in females with intellectual disability" is an invention of Wikipedia and does not appear in the literature. The article should be at Epilepsy and mental retardation limited to females which seems to be the most common form in recent literature. Other popular variants are Epilepsy in females with mental retardation and Epilepsy limited to females with mental retardation. The literature uses the abbreviation EFMR regardless of which long-form is used. The term "Juberg-Hellman Syndrome", in respect to the first doctors to described it, doesn't seem to have caught on (it is only ever used as an alternative in parenthesis). Various parent charities seem to prefer "PCDH19 Female Limited Epilepsy" because it avoids the dreaded "Retardation" word and it makes it sound like we know the cause (the PCDH19 gene). However, the field appears to be in a state of flux and it isn't clear whether PCDH19 is linked to other epilepsies. Nor is the abbreviation FLE used by these charities a wise choice as "Frontal Lobe Epilepsy" got here first.
Wikipedia can't rename a syndrome just because it uses words terms we dislike. I think Epilepsy and mental retardation limited to females is a better choice than the original Epilepsy in females with mental retardation, even though the original matches up better with the EFMR abbreviation. We should follow the best literature practice here and that name appears to be current favourite. Perhaps in future the naming will become clearer. This is far from alone among epilepsy syndromes in having multiple names and genetics is only starting to help with classification, which remains complex. There isn't a one gene = one syndrome pattern, unfortunately. Colin° Talk 21:17, 22 November 2013 (UTC)
Juberg-Hellman Syndrome seems to be a practical alternative, and would provide time for the researchers and academics time to adjust, to legally comply and to use acceptable teminology. dolfrog ( talk) 14:08, 23 November 2013 (UTC)
The new name had zero refs in the literature. I have restored it to the previous name where there is at least some refs. We do not get to invent new names. Wikipedia is not here to invent new knowledge but to simply reflect sources. What is with "legally comply and to use acceptable terminology"? Doc James ( talk · contribs · email) (if I write on your page reply on mine) 22:45, 23 November 2013 (UTC)
{{
cite web}}
: CS1 maint: multiple names: authors list (
link) and
"Online Mendelian Inheritance in Man® An Online Catalog of Human Genes and Genetic Disorders"..The issue was "Epilepsy in females with intellectual disability". There is a big move away from naming conditions after people. Thus I am not sure I agree with the Juberg Hellman syndrome. I am happy with whatever the ICD uses. Doc James ( talk · contribs · email) (if I write on your page reply on mine) 23:18, 23 November 2013 (UTC)
Moved back from "Epileptic Encephalopathy, Early Infantile, 9" We need discussion first. There was no consensus per the above. Doc James ( talk · contribs · email) 04:57, 1 January 2015 (UTC)
Yes OMIM gives
Likely the second one. Doc James ( talk · contribs · email) 13:50, 1 January 2015 (UTC)
Recent literature is starting to shift away from the current name, “Epilepsy-intellectual disability in females”, which is used on Wikipedia. I would like to propose changing the Wikipedia page title to “PCDH19-related female-limited epilepsy” or “PCDH19 gene-related epilepsy”.
Please find below a breakdown of where I have observed the shift to “PCDH19-related female-limited epilepsy” and/or “PCHD19 gene-related epilepsy” – which started shortly after the PCDH19 gene was discovered in 2008.
Primary Medical Literature Sample:
Secondary Medical Literature Sample:
Patient Registry:
International Medical Conferences:
Government Organizations Recognition:
Non-Profit Advocacy Organizations:
Djahmei ( talk) 20:49, 20 December 2016 (UTC)