Abstract
In preparation for strategic planning of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), a special session titled the Presidential Round Table took place during the GRAPPA annual meeting in Stockholm, Sweden, in July 2015. During this session, past, current, and incoming presidents of GRAPPA reflected on GRAPPA’s history and provided insights about GRAPPA’s future, followed by general discussion by the membership.
Dafna Gladman, the first president (2006–2009) of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), provided an overview of GRAPPA and its history at a special session, the Presidential Round Table, during the 2015 GRAPPA annual meeting. GRAPPA’s inception was a natural progression from the CASPAR (Classification for Psoriatic Arthritis Criteria) project, from which the current classification criteria for psoriatic arthritis (PsA) were derived1. The CASPAR project included 30 centers from various parts of the world, and was a clear example of the ability of this community to successfully collaborate. Philip J. Mease and Philip S. Helliwell conferred with the leadership of the Ankylosing Spondylitis Assessment international Society (ASAS) about whether PsA should be a subgroup of that society or its own entity. Because the study of PsA required collaboration between rheumatologists and dermatologists, it became clear that it needed to be its own separate society, and soon the CASPAR investigator group formed the rheumatology core of a formal international collaboration to study PsA and psoriasis, along with a group of psoriasis experts.
The first GRAPPA steering group included rheumatologists Philip Mease (USA), Dafna Gladman (Canada), Desiree van der Heijde (The Netherlands), Robert Landewé (The Netherlands), Philip Helliwell (UK), Hermann Mielants (Belgium), Anneliese Boonen (The Netherlands), Peter Nash (Australia), Christopher T. Ritchlin (USA), Christian Antoni (Germany), Arthur Kavanaugh (USA), Josef Smolen (Austria), and Joachim Kalden (Germany); and dermatologists Mark Lebwohl (USA), Gerald Krueger (USA), Alice Gottlieb (USA), Steve Feldman (USA), Allan Menter (USA), and Chris Griffiths (UK).
Mission
At the initial meeting of GRAPPA in August 2003, the mission was established to:
Increase awareness and early diagnosis of psoriasis and PsA
Develop and validate research assessment tools to measure clinical status and disease outcome
Evaluate treatment modalities
Support and conduct basic research on disease pathophysiology; and
Foster communication between rheumatologists, dermatologists, representatives of patient advocacy organizations, biopharmaceutical companies, regulatory agencies, and others who are interested in the advancement of care of psoriasis and PsA.
Objectives
The mission of GRAPPA was to be achieved through the following objectives:
Provide a forum for communication
Develop and conduct collaborative research and education, and provide the opportunity to share knowledge and research findings with others
Develop and validate a criteria set for PsA
Prioritize domains of enquiry within PsA and psoriasis for research
Review, develop, and validate effective and feasible outcome measures for the assessment of PsA and psoriasis
Promote national and international collaborative registries of patients with PsA or psoriasis
Work closely with patient advocacy organizations to promote public education and awareness of PsA and psoriasis and improve understanding of patient needs
Work with pharmaceutical companies to promote and conduct research on effective therapies for PsA and psoriasis
Work with regulatory agencies to establish appropriate guidelines for regulatory approval of new therapies
Work with other professional bodies such as the American College of Rheumatology (ACR), American Academy of Dermatology, European Academy of Dermatology and Venereology, European Congress of Rheumatology, Outcome Measures in Rheumatology Clinical Trials (OMERACT), etc., to promote knowledge of and research about PsA and psoriasis within the context of those disciplines; and
Develop treatment guidelines for governmental and other interested parties.
Projects
These objectives were addressed through several projects carried out by GRAPPA, including:
CASPAR–PsA classification
The classification criteria, published in 2006, have been used to identify patients in clinical trials, to describe patients included in observational studies, and to identify patients with early as well as established disease1,2,3,4.
Outcome measures with OMERACT
At the first GRAPPA meeting, members conducted an exercise to identify domains of inquiry that would be important for clinical trials and observational studies in PsA, which resulted in a PsA workshop at OMERACT 2006, followed by a module at OMERACT 20085,6. The latter resulted in a core set of domains that were considered essential to measure in all PsA clinical trials, including assessment of peripheral joint activity, skin activity, patient global disease activity, patient pain, function, and health-related quality of life. Domains that were considered important but not mandatory for all phases of clinical trial development included dactylitis, enthesitis, spinal disease, fatigue, nail lesions, physician’s global assessment, and radiological assessments. Items to be further investigated included other imaging (e.g., magnetic resonance imaging, computed tomography, and ultrasound) and participation. Instruments were suggested for each of these domains; however, many of the instruments required further assessment and validation.
At subsequent OMERACT meetings, composite indices to assess psoriatic disease activity were introduced but not fully accepted. At the most recent OMERACT meeting in 2014, further patient participation was mandated, and a proposal for the development of a new set of domains as well as instruments was introduced, which will follow the new OMERACT filter 2.0 framework7,8,9.
GRAPPA Composite Exercise (GRACE)
This project involved 31 GRAPPA centers and 503 patients in a study to develop composite measures for the assessment of disease activity in PsA. Two new composite measures to assess disease activity in PsA were developed, and have since been included as secondary measures in a number of clinical trials for new medications in PsA10.
Arthritis mutilans definition
Although arthritis mutilans is recognized as a typical feature of PsA, its definition has been vague. It varies from 1 joint with a pencil-in-cup change on radiographs, to 5 or more such joints, or to inclusion of joints that are ankylosed. This issue was addressed specifically at the 2012 GRAPPA annual meeting11. Members agreed that erosion involving entire articular surfaces on both sides of the joint or pencil-in-cup change were sufficient radiographic features, and that shortening of finger or toe, digital telescoping, or flail joint not due to subluxation should be included in the clinical definition.
Treatment recommendations
Following the initial GRAPPA meeting in 2003, treatment recommendations for PsA were developed, resulting in a review of the literature and a first set of recommendations published in 200912. Subsequently, a review of the literature covering the period from 2008 to 2014 was performed and a new set of recommendations was recently published13. As in other GRAPPA projects, patient research partners were involved in these deliberations.
Annual meetings
Since 2009, annual meetings have provided a forum for members to interact, exchange ideas, and learn, and participate in GRAPPA projects and workshops. These 2-day meetings are a chance to review ongoing GRAPPA projects, elicit individual ideas in small-group discussions, develop new projects for research and education, and discuss organizational issues. A highlight of each meeting is a session in which rheumatology and dermatology trainees present research abstracts in oral and poster presentations, allowing an opportunity to mentor and encourage the next generation of research clinicians interested in psoriasis and PsA.
Research funding
A single round of research project funding enabled 5 projects ranging from basic science to clinical epidemiology, all of which produced publications in peer-reviewed journals.
International Multicenter Psoriasis and Psoriatic Arthritis Reliability Trial (IMPART)
A reliability study of the assessment of patients with PsA was conducted by GRAPPA members (rheumatologists and dermatologists), who evaluated 20 patients in a Latin square design and proved that the assessments of joints, skin, and nail disease can be carried out reliably by both rheumatologists and dermatologists14.
Philip Mease, GRAPPA’s second president (2009–2012), elaborated on the growth of GRAPPA as a truly international and authoritative research and education society. Currently, GRAPPA has 650 members worldwide, balanced between rheumatology and dermatology representation. The organization is on a sound financial footing, receiving unrestricted grants from 13 companies to support meetings and project work, as well as project-specific funding for research and educational activities.
Educational projects
Numerous education projects have been conducted15,16. Since 2012, GRAPPA has collaborated with SPARTAN (Spondyloarthritis Research and Therapy Network) to conduct over 25 continuing medical education (CME) programs to educate rheumatologists and trainees about PsA and spondyloarthritis (SpA) in US cities. Members of both organizations collaborate to discuss disease state, epidemiology, pathophysiology, assessment, and management, as well as physical examination of patients. More recently, GRAPPA, SPARTAN, and ASAS have conducted educational programs at the ACR annual meeting. In 2014, GRAPPA and the National Psoriasis Foundation collaborated on a series of dermatology-rheumatology CME programs to teach US dermatologists, rheumatologists, and trainees about psoriasis and PsA. Each lecture and workshop is team-taught by a GRAPPA dermatologist and rheumatologist and covers the same content area as the SPARTAN collaboration, but with a focus on psoriasis and PsA. These symposia have been well attended and are well received, filling an important gap in up-to-date education about PsA, SpA, and psoriasis.
Using unrestricted pharmaceutical support, GRAPPA has conducted combined rheumatology-dermatology educational symposia in many countries worldwide, including Brazil, Argentina, Mexico, Japan, Korea, China, India, UK, Spain, Norway, The Netherlands, Belgium, Denmark, Greece, United Arab Emirates, Saudi Arabia, Singapore, and Australia, and in Africa. These symposia are half-day to 2-day events and include both plenary lectures and small group workshops covering all aspects of PsA and psoriasis. A comprehensive educational slide deck about PsA and its care has been developed for use by GRAPPA educators17.
Video training modules
GRAPPA has developed video modules for the assessment of skin, nails, peripheral joints, enthesitis, dactylitis, and the spine. These are used freely by GRAPPA members to teach rheumatology fellows and dermatology residents. They have been used primarily by pharmaceutical companies and those managing clinical registries to train investigators who need to apply standardized examination techniques in clinical studies and registries. A certification process is available to demonstrate compliance to regulatory agencies17.
Wolf-Henning Boehncke, immediate past president (2012–2015), underlined the importance of GRAPPA’s recognition as a truly global and interdisciplinary group. The representation and active participation of experts from different medical specialties — primarily but not exclusively rheumatologists and dermatologists — along with patient research partners, representing countries from North America, Europe, and beyond, give excellent credibility to GRAPPA’s projects and objectives, such as treatment recommendations for psoriasis and PsA. Thus, Boehncke’s election as a European dermatologist (Geneva) to become GRAPPA’s third president (Gladman and Mease are both North American rheumatologists) proves the seriousness of the group’s ambitions in this regard. With Helliwell, rheumatologist from Leeds, as incoming president, the call continues to be strong for GRAPPA members outside North America to accept responsibility.
Among the examples for “globalizing” GRAPPA initiatives is the import to Europe of a modular program for CME initially developed for the United States and Canada by Mease and Amit Garg. Helliwell led this project, along with Boehncke, Kurt de Vlam (rheumatologist from Belgium), and Lluis Puig (dermatologist from Spain) as European faculty. Together, they organized 7 GRAPPA workshops for dermatologists and rheumatologists across Europe in 2015, with more to follow in 2016.
Helliwell, as incoming president, reflected on the health and current structure of GRAPPA and made some additional points:
Research funding should be reintroduced because the previously funded projects were thought to be good value for the money
GRAPPA must not lose focus on the basic science of psoriasis and PsA and should include at least 1 module on this topic at each annual meeting; and
Over half the membership of GRAPPA are “silent,” i.e., they did not contribute to the annual meeting, nor to GRAPPA activities requiring participation; for example, only 130 members responded to the latest survey on the “flare” module.
Helliwell proposed that wider involvement be encouraged by revitalizing the committee structure, with a dermatology/rheumatology chair/co-chair for each committee and active participation in at least 1 group by each GRAPPA member.
GRAPPA has come a long way as an organization, from its inception in 2003 as a small society dedicated to psoriasis and PsA research and education to its current status as a large, productive, and inspirational organization that serves as a central node for clinician-researchers, patient service organizations and patient researchers, representatives of biopharmaceutical companies, and others who collaborate to further our understanding and improve our ability to care for this disease spectrum.
