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| http://dx.doi.org/10.1002/cnr2.1657 | DOI Listing |
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Long COVID in transgender and gender nonbinary people in the United States.
Sci Rep
January 2025
Division of Healthcare in Adult Populations, Duke University School of Nursing, Durham, NC, USA.
Despite recommendations in the US National Research Action Plan on Long COVID, gender identity is rarely reported in research and surveillance used to guide public health programming and clinical care. We analyzed data from a cross-sectional study of COVID-19 in a nationwide sample of transgender and nonbinary (TNB) people (N = 2,134). Participants were surveyed between June 14, 2021 and May 1, 2022.
View Article and Find Full Text PDFEmbedding the patient voice into research on spontaneous preterm birth-themes from a Preterm Birth Advisory Council.
PLoS One
December 2024
UCD Perinatal Research Centre, UCD School of Medicine, University College Dublin, National Maternity Hospital, Dublin, Ireland.
Background: Spontaneous preterm birth (sPTB) has a deep immediate impact on patients but also alters their care and experience in subsequent pregnancies. There is an absence of the pregnant patient's voice in the research surrounding pregnancy at risk of sPTB.
Materials/methods: The Preterm Birth Advisory Council was established at the National Maternity Hospital (NMH) in January 2023, to introduce and embed the patient voice in research into sPTB prevention.
Investigating the Salience of Clinical Meaningfulness and Clinically Meaningful Outcomes in Metastatic Breast Cancer Care Delivery.
JCO Oncol Pract
September 2024
PRECISIONheor, Los Angeles, CA.
Purpose: As metastatic breast cancer (mBC) treatment evolves, there is a need to understand how clinical meaningfulness, or a meaningful change in a patient's daily life, and clinically meaningful outcomes inform patient-centered care. Partnering with key stakeholders ensures patient-centered research incorporates the knowledge and expertise of advisors with lived experience. We describe a multistakeholder engagement approach to examine how people living with mBC (PLWmBC), caregivers, and health care providers interpret clinical meaningfulness and clinically meaningful outcomes and their influence on mBC treatment decision making and care.
View Article and Find Full Text PDFUsing real-world data to accelerate the search for long COVID therapies.
Life Sci
September 2024
Emory University, United States of America. Electronic address:
Long COVID, a spectrum of symptoms and syndromes that can develop after SARS-COV-2 infection, can significantly affect patients' health, quality of life and impact their ability to productively function in society. There is currently no approved therapy for Long COVID and there is an urgent need for rigorous clinical trials to find such treatments. Although research into the pathophysiology of Long COVID is advancing, investigations into treatment for patients remain underfunded and, as a result, understudied.
View Article and Find Full Text PDFThe growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization.
Ther Adv Rare Dis
July 2024
Department of Neurology and Neurological Sciences, Stanford University, Stanford, CA, USA.
TESS Research Foundation (TESS) is a patient-led nonprofit organization seeking to understand the basic biology and clinical impact of pathogenic variants in the SLC13A5 gene. TESS aims to improve the fundamental understanding of citrate's role in the brain, and ultimately identify treatments and cures for the associated disease. TESS identifies, organizes, and develops collaboration between researchers, patients, clinicians, and the pharmaceutical industry to improve the lives of those suffering from SLC13A5 citrate transport disorder.
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