Glossary entry (derived from question below)
Spanish term or phrase:
representante del núcleo afectado
English translation:
lay members [community representatives]
Added to glossary by
S. Kathryn Jiménez Boyd
Jul 17, 2022 17:33
1 yr ago
39 viewers *
Spanish term
Spain
Your ideas, conveyed.
Native in: English (Variants: US, UK, Canadian, US South, British, Irish) 
Works in: Spanish to English, Catalan to English, English
representante del núcleo afectado
Spanish to English
Medical
Medical (general)
Hi everyone, I'm working on clinical trial documents from Mexico. I understand 100% what this means: https://www.cronica.com.mx/notas-el_representante_del_nucleo...
It comes after someone's name as a title on a list of members on an Ethics Committee. However, I'm not finding whether there's a generally accepted translation for this, and I want to be consistent with the terms already used in this domain. Thanks in advance!
It comes after someone's name as a title on a list of members on an Ethics Committee. However, I'm not finding whether there's a generally accepted translation for this, and I want to be consistent with the terms already used in this domain. Thanks in advance!
Proposed translations
(English)
| 3 +1 | lay members [community representatives] |
Chema Nieto Castañón
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| 4 +1 | representative of the group [of people] who have the disease/are ill |
liz askew
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Proposed translations
+1
1 day 4 hrs
Chema Nieto Castañón
Spain
Spain
Native in Spanish
Specializes in field
Spain
Psychologist & Emergency Physician
Native in: Spanish (Variant: Standard-Spain) 
Works in: English to Spanish
Related KudoZ points
:
624
Spanish term (edited):
representante del núcleo afectado +
Selected
lay members [community representatives]
"representantes del núcleo afectado o de personas usuarias de los servicios de salud"
Lay members (of a REC) is the simple common expression to convey all that (in BR-ENG). Lay members of a research ethics committee are the nearest to the subjects of the study or to health care users. Like US jurors, they are "equals" more than "representatives" or "delegates", and that is the basic meaning of "representantes" in the original Spanish; to be similar to (ser imagen o símbolo de algo) and not to speak in the name of ill people or to be an elected member of an affected town or the like; they are just lay members belonging to the same state/society where the trial takes place.
In the US though they are called community representatives:
"at least one member who is not affiliated with the institution (commonly and incorrectly called a "community representative")."
https://www.encyclopedia.com/science/encyclopedias-almanacs-...
See UK REC members:
https://www.hra.nhs.uk/about-us/committees-and-services/res-...
Lay members (of a REC) is the simple common expression to convey all that (in BR-ENG). Lay members of a research ethics committee are the nearest to the subjects of the study or to health care users. Like US jurors, they are "equals" more than "representatives" or "delegates", and that is the basic meaning of "representantes" in the original Spanish; to be similar to (ser imagen o símbolo de algo) and not to speak in the name of ill people or to be an elected member of an affected town or the like; they are just lay members belonging to the same state/society where the trial takes place.
In the US though they are called community representatives:
"at least one member who is not affiliated with the institution (commonly and incorrectly called a "community representative")."
https://www.encyclopedia.com/science/encyclopedias-almanacs-...
See UK REC members:
https://www.hra.nhs.uk/about-us/committees-and-services/res-...
Peer comment(s):
| neutral |
liz askew
: I think you need to find a definition of the term in Spanish.
8 mins
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Oh, Kathryn explicitly says she wants to be "consistent with the terms already used in this domain". In order to do that she needs to simplify the original Spanish version and avoid a literal translation in this case.
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| agree |
Robert Carter
: Yes, that's what I kept finding in English texts, but needed the expert confirmation you've provided. Good to see you again, Chema!//Importantly, the núcleo isn't the group with the disease, but the wider community from which the subjects will be drawn.
6 hrs
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Good to see you too, Robert ;) // Exactly so, Robert. I understand the wording is quite confusing anyhow but the concept is as you say; it refers to members of the same community/society.
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4 KudoZ points awarded for this answer.
Comment: "Hi Chema,
Yes I believe this is it, since the Spanish (Spain) clinical trial documents I've been doing lately also have board members called "miembros legos" (https://www.bioeticadesdeasturias.com/un-lego-en-un-ceim/), which I always translate as "lay members" and this seems to be the Mexican equivalent. Thanks Chema!"
+1
1 hr
representative of the group [of people] who have the disease/are ill
Clinical trials - NHS
https://www.nhs.uk › conditions › clinical-trials
A clinical trial compares the effects of 1 treatment with another. ... Phase 2 trials: The new medicine is tested on a larger group of people who are ill.
Learn About Clinical Studies - ClinicalTrials.gov
https://clinicaltrials.gov › about-studies › learn
Every clinical study is led by a principal investigator, who is often a medical doctor. Clinical studies also have a research team that may include doctors, ...
Types of clinical trials | Cancer Research UK
https://www.cancerresearchuk.org › find-a-clinical-trial
1 Feb 2022 — Medical research studies involving people are called clinical trials. ... The research team recruits a group of people who have a disease ...
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Note added at 1 hr (2022-07-17 18:46:39 GMT)
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OR
group of people/people with the disease/condition
Step 3: Clinical Research | FDA
https://www.fda.gov › drug-development-process › step...
4 Jan 2018 — More videos on YouTube ; Phase 1 · 20 to 100 healthy volunteers or***** people with the disease/condition***. Length of Study: Several months ; Phase 2 · Up ...
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Note added at 1 day 4 hrs (2022-07-18 22:06:00 GMT)
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https://www.cronica.com.mx/notas-el_representante_del_nucleo...
definition here:
Al final de la Guía se agrega un glosario, donde dice que el núcleo afectado “se refiere al grupo de personas quienes cursan con la patología o con las características señaladas en la investigación” (pág. 53).
Peer comment(s):
| agree |
ezpz
: [external member] representing the patients / speaking on behalf of the affected persons - I don't think there's a standard name for that position. Should probably add "elected" if that is the case, or if he/she is the head of a formal group.
1 day 2 hrs
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But I think there is a standard translation, as I have submitted, see the last reference.
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| neutral |
Chema Nieto Castañón
: Hi liz; the people with the desease are the subjects of the study. In a research ethics committee there are no selected patients as such (as those of a clinical trial) but volunteer non-scientific lay members from the same community of the subjects.
1 day 3 hrs
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hmm, still don't think "lay members" covers it, FWIW
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| neutral |
Robert Carter
: I don't believe the "núcleo afectado" means "group with the disease", but rather the wider community from which the research subjects will be drawn. As Chema says, the ethics committee comes before the study [which in any case is presumably blinded].
1 day 22 hrs
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Reference comments
1 hr
Reference:
see
Al final de la Guía se agrega un glosario, donde dice que el núcleo afectado “se refiere al grupo de personas quienes cursan con la patología o con las características señaladas en la investigación” (pág. 53).
--------------------------------------------------
Note added at 1 hr (2022-07-17 18:43:56 GMT)
--------------------------------------------------
Types of clinical trials | Cancer Research UK
https://www.cancerresearchuk.org › find-a-clinical-trial
1 Feb 2022 — Medical research studies involving people are called clinical trials. ... The research team recruits ***a group of people who have a disease*** ...
--------------------------------------------------
Note added at 1 hr (2022-07-17 18:43:56 GMT)
--------------------------------------------------
Types of clinical trials | Cancer Research UK
https://www.cancerresearchuk.org › find-a-clinical-trial
1 Feb 2022 — Medical research studies involving people are called clinical trials. ... The research team recruits ***a group of people who have a disease*** ...
Peer comments on this reference comment:
| agree |
ezpz
1 day 2 hrs
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Yes, I think it is important to specify "representative for/of a group of people with the pathology/disease" - It needs to be a specific as I have entered as my contribution
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| neutral |
Chema Nieto Castañón
: Those are the people entering the study. There is none of them in an ethics committee. "Community representative", although used is incorrect precisely because of that; it is not really a representative but just a lay person from the same community.
1 day 12 hrs
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Discussion
In a research ethics committee this type of non-expert community-member is usually called a "lay member" (and sometimes in the US a "community representative", although this denomination might lead to misinterpretation). In fact, the original Spanish does say "representantes del núcleo afectado o (representantes) de personas usuarias de los servicios de salud". It is just a twisted way to say that these members of the ethics committee are so just for being a "normal" (non-expert, non-health related) part of the community and/or "normal" healthcare users.