| 1. |
- Joshi, Mrudula, et al.
(författare)
-
Listening to patients, for the patients : The COVAD Study-Vision, organizational structure, and challenges
- 2024
-
Ingår i: International Journal of Rheumatic Diseases. - : John Wiley & Sons. - 1756-1841 .- 1756-185X. ; 27:5
-
Tidskriftsartikel (refereegranskat)abstract
- Background: The pandemic presented unique challenges for individuals with autoimmune and rheumatic diseases (AIRDs) due to their underlying condition, the effects of immunosuppressive treatments, and increased vaccine hesitancy.Objectives: The COVID-19 vaccination in autoimmune diseases (COVAD) study, a series of ongoing, patient self-reported surveys were conceived with the vision of being a unique tool to gather patient perspectives on AIRDs. It involved a multinational, multicenter collaborative effort amidst a global lockdown.Methods: Leveraging social media as a research tool, COVAD collected data using validated patient-reported outcomes (PROs). The study, comprising a core team, steering committee, and global collaborators, facilitated data collection and analysis. A pilot-tested, validated survey, featuring questions regarding COVID-19 infection, vaccination and outcomes, patient demographics, and PROs was circulated to patients with AIRDs and healthy controls (HCs).Discussion: We present the challenges encountered during this international collaborative project, including coordination, data management, funding constraints, language barriers, and authorship concerns, while highlighting the measures taken to address them.Conclusion: Collaborative virtual models offer a dynamic new frontier in medical research and are vital to studying rare diseases. The COVAD study demonstrates the potential of online platforms for conducting large-scale, patient-focused research and underscores the importance of integrating patient perspective into clinical care. Care of patients is our central motivation, and it is essential to recognize their voices as equal stakeholders and valued partners in the study of the conditions that affect them.
|
|
| 2. |
- Kadam, Esha, et al.
(författare)
-
Collating the voice of people with autoimmune diseases : Methodology for the Third Phase of the COVAD Studies
- 2024
-
Ingår i: Rheumatology International. - : Springer. - 0172-8172 .- 1437-160X. ; 44:7, s. 1233-1244
-
Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: The growing recognition of holistic patient care highlights the various factors shaping the quality of life of individuals with autoimmune and rheumatic diseases (AIRDs). Beyond the traditional disease measures, there is an emerging acknowledgment of the less-explored aspects, including subjective well-being, social determinants of health, comorbidities, mental health, and medication adherence. Moreover, digital health services have empowered patients to engage actively in decision-making alongside clinicians. To explore these domains within the context of AIRDs, the "Collating the Voice of People with Autoimmune Diseases" COVAD survey was conceived, a successor of the previous two COVAD surveys. In this document, we present the study protocol in comprehensive detail.METHODS: The COVAD-3 survey is a cross-sectional patient self-reported e-survey incorporating multiple widely accepted scales/scores to assess various aspects of patients' lifestyles objectively. To ensure the survey's accuracy and usability across diverse regions, it will be translated into multiple languages and subjected to rigorous vetting and pilot testing. It will be distributed by collaborators via online platforms and data will be collected from patients with AIRDs, and healthy individuals over eight months. Data analysis will focus on outcome measures related to various social, demographic, economic, and psychological factors.CONCLUSION: With the increasing awareness to adopt a holistic treatment approach encompassing all avenues of life, the COVAD-3 survey aims to gain valuable insights into the impact of social, demographic, economic, and psychological determinants of health on the subjective well-being in patients with AIRDs, which will contribute to a better understanding of their overall health and well-being.
|
|
| 3. |
- Luo, Dongbao, et al.
(författare)
-
A hypervalent and cubically coordinated molecular phase of IF8 predicted at high pressure
- 2019
-
Ingår i: Chemical Science. - : Royal Society of Chemistry (RSC). - 2041-6539 .- 2041-6520. ; 10:8, s. 2543-2550
-
Tidskriftsartikel (refereegranskat)abstract
- Up to now, the maximum coordination number of iodine is seven in neutral iodine heptafluoride (IF 7 ) and eight in anionic octafluoride (IF 8− ). Here, we explore pressure as a method for realizing new hypercoordinated iodine compounds. First-principles swarm structure calculations have been used to predict the high-pressure and T → 0 K phase diagram of binary iodine fluorides. The investigated compounds are predicted to undergo complex structural phase transitions under high pressure, accompanied by various semiconductor to metal transitions. The pressure induced formation of a neutral octafluoride compound, IF 8 , consisting of eight-coordinated iodine is one of several unprecedented predicted structures. In sharp contrast to the square antiprismatic structure in IF 8− , IF 8 , which is dynamically unstable under atmospheric conditions, is stable and adopts a quasi-cube molecular configuration with R3& symmetry at 300 GPa. The metallicity of IF 8 originates from a hole in the fluorine 2p-bands that dominate the Fermi surface. The highly unusual coordination sphere in IF 8 at 300 GPa is a consequence of the 5d levels of iodine coming down and becoming part of the valence, where they mix with iodine's 5s and 5p levels and engage in chemical bonding. The valence expansion of iodine under pressure effectively makes IF 8 not only hypercoordinated, but also hypervalent.
|
|
