Building Bridges between Researchers and Patient Research Partners: A Report from the GRAPPA 2014 Annual Meeting

2015 ◽  
Vol 42 (6) ◽  
pp. 1021-1026 ◽  
Author(s):  
Maarten de Wit ◽  
Willemina Campbell ◽  
Ana-Maria Orbai ◽  
William Tillett ◽  
Oliver FitzGerald ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcomes Research ◽  
Patient Perspective ◽  
Mutual Understanding ◽  
Roles And Responsibilities ◽  
Working Groups ◽  
Governance Arrangements

Concurring with a worldwide trend to include the patient perspective in outcomes research, the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) recently engaged patients as collaborative partners in psoriatic arthritis (PsA) research. We summarize Building Bridges, a session held at the GRAPPA 2014 annual meeting, where interactive dialogue was encouraged between all participants regarding GRAPPA’s vision for patient research partner (PRP) involvement, including the mutual understanding of the roles and responsibilities of PRP and researchers in GRAPPA’s working groups, meetings, and governance arrangements. We conclude that involving PRP in GRAPPA projects is pivotal to optimizing incorporation of the patient perspective in psoriasis and PsA research.

scholarly journals Review of the Psoriatic Arthritis Working Group at OMERACT 12: A Report from the GRAPPA 2014 Annual Meeting

2015 ◽  
Vol 42 (6) ◽  
pp. 1048-1051 ◽  
Author(s):  
William Tillett ◽  
Lihi Eder ◽  
Niti Goel ◽  
Maarten de Wit ◽  
Alexis Ogdie ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Measures ◽  
Working Group ◽  
Patient Perspective ◽  
Patient Involvement ◽  
Group Discussions ◽  
The Core ◽  
Breakout Group ◽  
Core Set

At the 2014 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), the psoriatic arthritis (PsA) working group of OMERACT (Outcome Measures in Rheumatology) presented a review of the progress made at the OMERACT 12 meeting, held in 2014. Members of the PsA OMERACT working group presented work from the Patient Involvement in Outcome Measures for PsA initiative to improve the incorporation of patient research partners in PsA outcomes research, the results of discussions within the OMERACT breakout groups, and finally the voting results. The OMERACT 12 participants had endorsed the need to update the PsA core set according to the Filter 2.0 framework. The breakout group discussions identified potential opportunities for revising the core set, including consolidating existing redundancy within the core set, improving incorporation of the patient perspective, and including disease effects such as fatigue as a core criterion. GRAPPA members of the OMERACT working group now have a program of research to update the core set with the goal of seeking endorsement at OMERACT 13, to be held in 2016.

scholarly journals Report of the Skin Research Working Groups From the GRAPPA 2020 Annual Meeting

2021 ◽  
pp. jrheum.201668
Author(s):  
Lourdes M. Perez-Chada ◽  
Alison Kohn ◽  
Alice B. Gottlieb ◽  
April W. Armstrong ◽  
Lihi Eder ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Measures ◽  
Working Group ◽  
Treatment Satisfaction ◽  
Panel Discussion ◽  
Musculoskeletal Symptoms ◽  
Working Groups ◽  
Feasible Outcome ◽  
Longitudinal Observational Studies

At the 2020 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), the International Dermatology Outcome Measures (IDEOM) Initiative Psoriasis (PsO) Working Group presented an update on its work to agree on meaningful, valid, and feasible outcome measures for PsO randomized controlled trials and longitudinal observational studies. The Treatment Satisfaction Working Group presented the development of a treatment satisfaction instrument to be utilized in PsO clinical trials. The Musculoskeletal Symptoms Working Group presented an overview of their work conducted to date to define how to best measure musculoskeletal symptoms in PsO clinical studies, and discussed next steps during an open-panel discussion, which included PsO and psoriatic arthritis experts.

Prologue: 2016 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA)

2017 ◽  
Vol 44 (5) ◽  
pp. 658-660 ◽  
Author(s):  
Philip S. Helliwell ◽  
Dafna D. Gladman ◽  
Alice B. Gottlieb
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Measures ◽  
Psoriasis Patient ◽  
Steering Committee ◽  
Interleukin 17 ◽  
Process Of Care ◽  
Psoriatic Disease ◽  
Working Groups ◽  
Patient Groups

The 2016 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) was held in Miami, Florida, USA, and attended by rheumatologists, dermatologists, and representatives of biopharmaceutical companies and patient groups. As in previous years, GRAPPA members held a symposium for trainees to discuss their research in psoriatic disease with experts in the field. A strategic planning session was convened by the Steering Committee this year to review the work of GRAPPA since its inception in 2003. Other subjects featured during the annual meeting included a partnership with KPMG LLP (UK) to conduct interviews at research centers worldwide to analyze the process of care in psoriasis and psoriatic arthritis (PsA); a discussion of the effects of interleukin 17–related pathways on the skin and joints in psoriasis and PsA; summaries of recently published treatment recommendations and related guides; 4 separate discussions of psoriasis patient examinations; updates from working groups in the Outcome Measures in Rheumatology and the International Dermatology Outcome Measures; a discussion of patient centricity from GRAPPA’s patient research partners; and an update of research and educational projects from GRAPPA. In this prologue, we introduce the papers that summarize that meeting.

Patient Participation in Psoriasis and Psoriatic Arthritis Outcome Research: A Report from the GRAPPA 2013 Annual Meeting

2014 ◽  
Vol 41 (6) ◽  
pp. 1206-1211 ◽  
Author(s):  
Maarten de Wit ◽  
Willemina Campbell ◽  
Oliver FitzGerald ◽  
Dafna D. Gladman ◽  
Phillip S. Helliwell ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Patient Group ◽  
Patient Participation ◽  
Outcome Research ◽  
Patient Perspective ◽  
Conference Program ◽  
Research Projects ◽  
First Time ◽  
Participation In Research

For the first time, 8 patients with psoriatic arthritis (PsA) participated as full delegates at the 2013 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). Patients were invited to provide their perspective for different sessions of the conference program. Before the conference, the patient delegates had a separate meeting to familiarize themselves with the conference program and to gain a better understanding of the vision and objectives of GRAPPA. During the conference, the patient group discussed options for increased involvement in research projects. Herein we summarize the presentations on patient participation in research, the experiences of the patient group, and plans to enhance the patient perspective in psoriasis and PsA research.

Instruments Measuring Physical Function for Psoriatic Arthritis Endorsed at GRAPPA 2020 Annual Meeting: Updates of the GRAPPA-OMERACT Working Group

2021 ◽  
pp. jrheum.201679
Author(s):  
Ying Ying Leung ◽  
Ana-Maria Orbai ◽  
William Tillett ◽  
Alexis Ogdie ◽  
Lihi Eder ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Physical Function ◽  
Annual Meeting ◽  
Working Group ◽  
Structural Damage ◽  
Short Form ◽  
Core Outcome Set ◽  
Health Assessment ◽  
Working Groups ◽  
Set Up

The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA)–Outcome Measures in Rheumatology (OMERACT) Psoriatic Arthritis (PsA) Working Group provided updates at the 2020 GRAPPA annual meeting on its work toward developing a core outcome set for PsA. Working groups were set up for the 4 prioritized domains: enthesitis, fatigue, structural damage, and physical function. Two instruments for measurement of physical function were provisionally endorsed: (1) the Health Assessment Questionnaire–Disability Index and (2) the physical functioning domain in the Medical Outcomes Study 36-item Short Form survey.

Let’s Talk about Inclusion: A Report on Patient Research Partner Involvement in the GRAPPA 2015 Annual Meeting

2016 ◽  
Vol 43 (5) ◽  
pp. 970-973 ◽  
Author(s):  
Maarten de Wit ◽  
Willemina Campbell ◽  
Laura C. Coates ◽  
Dafna D. Gladman ◽  
Jana James ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Research ◽  
Patient Perspective ◽  
Partner Involvement ◽  
Made In

Members of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) have worked since 2012 to include the patient perspective in their psoriatic arthritis (PsA) research as well as in their annual meetings. Herein, patient research partners (PRP) report the progress made in their experience at these GRAPPA meetings and discuss their perception of the challenges that remain in ensuring that patients have a voice in PsA outcome research.

scholarly journals Optimising neurodevelopmental and psychosocial outcomes for survivors with CHD: a research agenda for the next decade

2021 ◽  
pp. 1-3
Author(s):  
Erica Sood ◽  
Jeffrey P Jacobs ◽  
Bradley S Marino
Keyword(s):  
Health Disparities ◽  
Outcomes Research ◽  
Research Agenda ◽  
Clinical Care ◽  
Neurodevelopmental Outcome ◽  
Psychosocial Outcomes ◽  
The United States ◽  
Future Research ◽  
Neurodevelopmental Outcomes ◽  
Working Groups

Abstract Neurodevelopmental and psychosocial impairments negatively impact health-related quality of life for survivors with CHD and complicate the transition to independent adulthood. Risk for neurodevelopmental and psychosocial impairments is influenced by a complex interplay among genetic, foetal, surgical, perioperative, family, and social factors, requiring a multi-pronged approach to neuroprotection and intervention. To ensure future research can ultimately reduce the burden of CHD for individuals, families, and society, the most pressing issues in cardiac neurodevelopment requiring scientific investigation must be identified. Through funding from an R13 Grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, the Cardiac Neurodevelopmental Outcome Collaborative convened a two-day meeting of international experts in cardiac neurodevelopmental and psychosocial research, clinical care, and health disparities, including patient and family stakeholders, to define the cardiac neurodevelopmental and psychosocial outcomes research agenda for the next decade. Seven multidisciplinary working groups were formed to address key domains crucial to the advancement of cardiac neurodevelopmental and psychosocial outcomes research: 1) Foetal Brain Development and Neuroprotection, 2) Surgical/Perioperative Neuroprotection and Neurodevelopment, 3) Characterization of Neurodevelopmental and Psychological Outcomes, 4) Neurodevelopmental and Psychosocial Intervention, 5) Parent Mental Health and Family Functioning, 6) Neurodevelopmental Education, Outreach and Advocacy, and 7) Health Disparities and Neurodevelopmental Outcomes. Working groups identified significant gaps in knowledge and critical questions that must be answered to further knowledge, policy, care, and outcomes. The development of a research agenda in cardiac neurodevelopmental and psychosocial outcomes is critical for informing collaborative initiatives and allocation of funding for research to scientific inquiries of highest value to key stakeholders.

Cardiovascular Comorbidities of Psoriasis and Psoriatic Arthritis: A Report from the GRAPPA 2012 Annual Meeting

2013 ◽  
Vol 40 (8) ◽  
pp. 1434-1437 ◽  
Author(s):  
April W. Armstrong ◽  
Joel M. Gelfand ◽  
Wolf-Henning Boehncke ◽  
Ehrin J. Armstrong
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Tumor Necrosis ◽  
Panel Discussion ◽  
Future Research ◽  
Research Directions ◽  
Cardiovascular Comorbidities ◽  
Future Research Directions ◽  
Necrosis Factor

At the 2012 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) in Stockholm, Sweden, several GRAPPA members led a panel discussion on cardiovascular (CV) comorbidities of psoriasis and psoriatic arthritis (PsA). The panelists discussed the role of insulin resistance in the pathophysiology of psoriasis, the possible effect of tumor necrosis factor inhibitors on CV comorbidities, and the effect of 12/23 monoclonal antibodies on CV outcomes. The panelists also addressed how lessons from CV comorbidity research could be applied to other areas of comorbidity research in psoriasis and PsA and identified future research directions in this area.

scholarly journals Magnetic Resonance Imaging in Psoriatic Arthritis — Update on Current Status and Future Perspectives: A Report from the GRAPPA 2010 Annual Meeting

2012 ◽  
Vol 39 (2) ◽  
pp. 408-412 ◽  
Author(s):  
MIKKEL ØSTERGAARD ◽  
RENÉ PANDURO POGGENBORG
Keyword(s):  
Magnetic Resonance Imaging ◽  
Psoriatic Arthritis ◽  
Magnetic Resonance ◽  
Annual Meeting ◽  
Current Status ◽  
Future Research ◽  
Future Perspectives ◽  
Resonance Imaging ◽  
Primary Driver ◽  
Magnetic Resonance Imaging Mri

The potential of magnetic resonance imaging (MRI) for use in clinical practice and research has gained increasing interest over the last decade. International collaborative initiatives from GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) and/or OMERACT (Outcome Measures in Rheumatology) may contribute to facilitating research, identifying appropriate areas for use, and reaching consensus on the optimal examination technique. Accordingly, GRAPPA, a primary driver of international research in psoriasis and psoriatic arthritis (PsA), has focused on the current use and future development of MRI and other modern imaging modalities in PsA. This review, presented at the GRAPPA 2010 annual meeting, describes the current status of MRI in PsA, with a focus on its use in diagnosis, monitoring, and prediction of the disease course and treatment response. Important areas for future research are also outlined.

Biomarkers of Radiographic Progression in Psoriatic Arthritis: A Report from the GRAPPA 2011 Annual Meeting

2012 ◽  
Vol 39 (11) ◽  
pp. 2189-2192 ◽  
Author(s):  
OLIVER FITZGERALD ◽  
CHRISTOPHER T. RITCHLIN ◽  
PHILIP J. MEASE
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Structural Damage ◽  
Radiographic Progression ◽  
Clinical Markers ◽  
Sample Collection ◽  
Critical Research ◽  
Specific Protocol ◽  
Radiographic Scoring Methods ◽  
Selection Of

Clinical markers of radiographic progression have been studied in patients with psoriatic arthritis (PsA), and results have clearly confirmed the progression of radiographic damage over a 2-year period. Biomarkers of radiographic progression damage (erosion and new bone formation) have also been identified as a critical research issue in these patients. At the 2011 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), members discussed development of a pivotal observational study (PsA Biodam study) to determine the validity of several soluble biomarkers in predicting structural damage in patients with PsA receiving standard therapies. Specific protocol issues discussed were the inclusion criteria, selection of candidate biomarkers, timing of sample collection, the primary radiographic outcome measure, radiographic scoring methods, possible substudies, and funding strategies.

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