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Prader-Willi syndrome mental health research strategy workshop proceedings: the state of the science and future directions

Overview of attention for article published in Orphanet Journal of Rare Diseases, January 2016
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  • Above-average Attention Score compared to outputs of the same age (53rd percentile)
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2 Facebook pages

Citations

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10 Dimensions

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36 Mendeley
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Title
Prader-Willi syndrome mental health research strategy workshop proceedings: the state of the science and future directions
Published in
Orphanet Journal of Rare Diseases, January 2016
DOI 10.1186/s13023-016-0504-1
Pubmed ID
Authors

Lauren Schwartz, Anthony Holland, Elisabeth Dykens, Theresa Strong, Elizabeth Roof, Jessica Bohonowych, Schwartz, Lauren, Holland, Anthony, Dykens, Elisabeth, Strong, Theresa, Roof, Elizabeth, Bohonowych, Jessica

Abstract

This paper reports on the 'Prader-Willi Syndrome (PWS) Mental Health Research Strategy Workshop' that took place in March 2015. PWS is characterized by a complex phenotype affecting multiple systems with a high prevalence of maladaptive behaviours, and neuropsychiatric illness. Prader Willi syndrome results from the absence of paternally derived alleles located at the imprinted chromosomal locus, 15q11-13. The goal of the workshop was to highlight the state of the science of the mental health of people with this rare neurodevelopmental disorder. Mental ill health and maladaptive behaviors significantly impact quality of life for persons with PWS and their caregivers. Effective treatments and further research into this area are critically needed. A multidisciplinary group of scientists and health care professionals were brought together to discuss the mental health and behavioral needs of people with PWS. The workshop strategy was to integrate established work on PWS with other relevant areas of study. The meeting also focused on two neurobiological systems that research had suggested were relevant to understanding the broader mental health aspects of PWS: the autonomic nervous system and oxytocin/vasopressin pathways. Other relevant topics were considered and recommendations made. The workshop presentations and working group discussions revealed that no one approach was sufficient to fully conceptualize the mental health challenges in PWS. Workshop discussions pointed to the need for theoretically informed studies focused on clinical characterization, measurement, and the probing of specific neurobiological systems through pharmaceutical or other interventions. Future studies in this area should explore the use of advanced neuroimaging protocols, as well as molecular studies using iPS cells in order to create more informed theories. Within this framework, workshop participants identified and prioritized key research questions, and highlighted current opportunities. Recommendations were made with respect to the development of specific resources and tools for furthering mental health research such as The Global PWS Registry, the development of effective endpoints, the use of animal models and iPS cells to aid understanding of the neurobiological underpinnings. Additionally, collaborative opportunities across disciplines and syndromes were highlighted and targeted research initiatives focused on psychological/behavioral interventions modified for use in PWS were recommended.

Twitter Demographics

The data shown below were collected from the profiles of 3 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 36 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 36 100%

Demographic breakdown

Readers by professional status Count As %
Student > Ph. D. Student 6 17%
Student > Master 4 11%
Student > Bachelor 4 11%
Student > Doctoral Student 4 11%
Librarian 3 8%
Other 7 19%
Unknown 8 22%
Readers by discipline Count As %
Medicine and Dentistry 8 22%
Psychology 6 17%
Neuroscience 3 8%
Nursing and Health Professions 2 6%
Philosophy 1 3%
Other 6 17%
Unknown 10 28%

Attention Score in Context

This research output has an Altmetric Attention Score of 2. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 22 October 2016.
All research outputs
#3,948,109
of 8,549,468 outputs
Outputs from Orphanet Journal of Rare Diseases
#603
of 1,145 outputs
Outputs of similar age
#113,523
of 253,799 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#20
of 38 outputs
Altmetric has tracked 8,549,468 research outputs across all sources so far. This one has received more attention than most of these and is in the 52nd percentile.
So far Altmetric has tracked 1,145 research outputs from this source. They receive a mean Attention Score of 5.0. This one is in the 43rd percentile – i.e., 43% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 253,799 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 53% of its contemporaries.
We're also able to compare this research output to 38 others from the same source and published within six weeks on either side of this one. This one is in the 44th percentile – i.e., 44% of its contemporaries scored the same or lower than it.