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Congenital, Hereditary, and Neonatal Diseases and Abnormalities Commons™
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- Childhood-onset chronic disease (1)
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Articles 1 - 4 of 4
Full-Text Articles in Congenital, Hereditary, and Neonatal Diseases and Abnormalities
Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh
Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh
Journal of Patient-Centered Research and Reviews
Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.
Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.
Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …
A Fond Farewell, Dennis J. Baumgardner
A Fond Farewell, Dennis J. Baumgardner
Journal of Patient-Centered Research and Reviews
In this From the Editor introduction to Volume 9, Issue 1, the retiring editor-in-chief of Journal of Patient-Centered Research and Reviews recalls the history and initial aims of JPCRR, discusses the contents of articles in the current issue, and says good-bye.
Challenges Of Pediatric Disease In Adulthood, Dennis J. Baumgardner, Brian Chicoine
Challenges Of Pediatric Disease In Adulthood, Dennis J. Baumgardner, Brian Chicoine
Journal of Patient-Centered Research and Reviews
Some chronic diseases — such as the rare bone disease X-linked hypophosphatemia, the impetus for a study reported within Volume 7, Issue 2 of the Journal of Patient-Centered Research and Reviews — are diagnosed in childhood but become more symptomatic in adulthood. In this editorial, the challenges, pitfalls, and opportunities regarding the care of adults with childhood-onset chronic diseases are examined using Down syndrome, cystic fibrosis, congenital heart disease, and Hirschsprung disease as examples.
Social Isolation Among Families Caring For Children With Disabilities, Dennis J. Baumgardner
Social Isolation Among Families Caring For Children With Disabilities, Dennis J. Baumgardner
Journal of Patient-Centered Research and Reviews
In this issue introduction, the editor-in-chief of Journal of Patient-Centered Research and Reviews comments on the social isolation experienced by families that include children with significant disabilities.