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A holistic approach to fragile X syndrome integrated guidance for person‐centred care.

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Title: A holistic approach to fragile X syndrome integrated guidance for person‐centred care.
Authors: Johnson, Kirsten (AUTHOR), Stanfield, Andrew C. (AUTHOR), Scerif, Gaia (AUTHOR), McKechanie, Andrew (AUTHOR), Clarke, Angus (AUTHOR), Herring, Jonathan (AUTHOR), Smith, Kayla (AUTHOR), Crawford, Hayley (AUTHOR)
Source: Journal of Applied Research in Intellectual Disabilities. May2024, Vol. 37 Issue 3, p1-11. 11p.
Subjects: Holistic medicine, Newborn screening, Fragile X syndrome, Age distribution, Patient-centered care, Intellectual disabilities, Medical screening, Integrated health care delivery, Children
Abstract: Background: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). Methods: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first‐hand experience of clinicians who have worked with those living with FXS over many years. Results: The article scopes proposed integrated guidance over the life course, including appendices of symptoms, comorbidities and referral options for FXS and Fragile X Premutation Associated Conditions. Conclusion: Integrated guidance would provide an authoritative source for doctors, health professionals, therapists, care workers, social workers, educators, employers, families and those living with FXS, so that a holistic, person‐centred approach can be taken across the United Kingdom to garner the best outcomes for those with FXS. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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PubType: Academic Journal
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  Data: A holistic approach to fragile X syndrome integrated guidance for person‐centred care.
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  Data: <searchLink fieldCode="AR" term="%22Johnson%2C+Kirsten%22">Johnson, Kirsten</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Stanfield%2C+Andrew+C%2E%22">Stanfield, Andrew C.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Scerif%2C+Gaia%22">Scerif, Gaia</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22McKechanie%2C+Andrew%22">McKechanie, Andrew</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Clarke%2C+Angus%22">Clarke, Angus</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Herring%2C+Jonathan%22">Herring, Jonathan</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Smith%2C+Kayla%22">Smith, Kayla</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Crawford%2C+Hayley%22">Crawford, Hayley</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22">Journal of Applied Research in Intellectual Disabilities</searchLink>. May2024, Vol. 37 Issue 3, p1-11. 11p.
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  Data: <searchLink fieldCode="DE" term="%22Holistic+medicine%22">Holistic medicine</searchLink><br /><searchLink fieldCode="DE" term="%22Newborn+screening%22">Newborn screening</searchLink><br /><searchLink fieldCode="DE" term="%22Fragile+X+syndrome%22">Fragile X syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Age+distribution%22">Age distribution</searchLink><br /><searchLink fieldCode="DE" term="%22Patient-centered+care%22">Patient-centered care</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+disabilities%22">Intellectual disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+screening%22">Medical screening</searchLink><br /><searchLink fieldCode="DE" term="%22Integrated+health+care+delivery%22">Integrated health care delivery</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink>
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  Data: Background: The Fragile X community has expressed a desire for centralised, national guidelines in the form of integrated guidance for Fragile X Syndrome (FXS). Methods: This article draws on existing literature reviews, primary research and clinical trials on FXS, a Fragile X Society conference workshop and first‐hand experience of clinicians who have worked with those living with FXS over many years. Results: The article scopes proposed integrated guidance over the life course, including appendices of symptoms, comorbidities and referral options for FXS and Fragile X Premutation Associated Conditions. Conclusion: Integrated guidance would provide an authoritative source for doctors, health professionals, therapists, care workers, social workers, educators, employers, families and those living with FXS, so that a holistic, person‐centred approach can be taken across the United Kingdom to garner the best outcomes for those with FXS. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1111/jar.13214
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        Text: English
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      – SubjectFull: Holistic medicine
        Type: general
      – SubjectFull: Newborn screening
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      – SubjectFull: Fragile X syndrome
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      – SubjectFull: Age distribution
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      – SubjectFull: Patient-centered care
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      – SubjectFull: Intellectual disabilities
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      – SubjectFull: Medical screening
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      – SubjectFull: Integrated health care delivery
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      – SubjectFull: Children
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      – TitleFull: A holistic approach to fragile X syndrome integrated guidance for person‐centred care.
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              M: 05
              Text: May2024
              Type: published
              Y: 2024
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