Minutes from the annual Scleroderma Working Party meeting
The annual Scleroderma Working Party meeting was held during the PRES 2016 Conference in Genova.
After welcoming participants, a new council was elected, as Dr. Ivan Foeldvari had finished his second term as chair of the WP. Members of the new council: Tamás Constantin (Hungary), Ivan Foeldvari (Germany) and Clare Pain (UK). The working party is chaired by Dr. Tamás Constantin (Hungary). All members of the council received full support at the voting.
Results of past year activities
Ivan Foeldvari presented last achievements of the working party.
Attendance at last year meeting
Around 10 colleagues attended the meeting. It was highlighted that this low number is not representative of the real interests of PRES members in scleroderma research. It is likely that many more people have an interest in scleroderma research. However, the annual meeting has issues as the main interacting forum of the WP. For example, many members might find it difficult to attend all PRES meetings. PRES meetings bring a significant financial burden on those who wish to attend WP meetings. Participation in WPs shouldn’t be limited by financial issues (registration fee, cost of travel and hotel). Further on, parallel WP meetings force PRES members to choose among WP meetings irrespectively to their full interest in different research activities. Thus we plan to open other communication channels, among them the annual meeting will be a very important one (since this is a face-to-face meeting), but won’t be the only possibility to contact with our fellow members. This will ensure better research collaboration and the valuable contribution of those who couldn’t attend the annual PRES meeting.
Results of past year activities
- Consensus meeting was held regarding establishing outcome measures for localised scleroderma (in Hamburg, 12/2015)- results presented as Poster at the PRES meeting in 2016 in Genova.
- SHARE — project for localized and systemic sclerosis- will be submitted soon
Successful publication of the results of the consensus meeting regarding : Diagnosis, treatment and follow up of patients with Raynaud´s Phenomenon
(Clare Pain et al, in: Clin Exp Rheumatol 2016, epub Juli 27)
- Consensus meeting planned, regarding developing a response index for juvenile systemic sclerosis
SAVE the date: 10. Dec. 2016, HAMBURG
- Registries are runnig by members of the working group
- JUSI (collecting data on dedicated projects — Francesco Zulian
- Validation of classification criteria of JSS
- Cardiac and CNS involvement of JSS
- Juvenile Scleroderma Inception Cohort — Ivan Foeldvari
- 80 patients from 18 countries
Standardization of the normal findings of the nailfold capillaroscopy in children — multicenter study in cooperation with the EULAR Microcirculation working group — led by Vanessa Smith , Ivan Foeldvariand Maurzio Cuttolo
JuSINET database is an instrument to be used for collecting data on dedicated projects. One project waiting to be sponsored is “Validation of Classification criteria for Juvenile Systemic Sclerosis” in collaboration with CARRA (PI: Anne Stevens, Francesco Zulian).
Other projects in the pipeline:
“New methods to approach cardiac involvement in JSSc”, (PI Francesco Zulian
”Central Nervous System involvement in Lineas Scleroderma of the face”. PI: Francesco Zulian)
Based on the proposed Outcome measures for localised scleroderma- validation of the outcome measures (PI: Ivan Foeldvari)
All ongoing projects will publish a short introduction for your more detailed information on this website. Stay tuned and follow our Medium journal.
Communication within the working party
Tamás Constantin highlighted the importance of efficient communication within the working party. You could find his presentation here: prezi link . He also published a short article on this topic in this journal.
Clare Pain highlighted some important points that Tamás Constantin eluded to in his talk. Communication is key as is a clear process for nominations, roles and terms for both the chair and secretary. We should establish clear and democratic system of nominations, which are made for the roles with a mission statement of what that individual would bring to the post and if there is more than one nomination it is voted for by members but not in a public forum as this can be difficult for all involved. We, as managerial officers of the working party, should set up a democratic voting system, which ensure that all voting members could actively contribute in all elections. She also thinks it is important for succession planning and for improving onward collaboration and encouraging new projects for the working groups to have new people in roles. We also wondered about encouraging trainees into the working party as this would also help with projects and new ideas. On the other hand we also should avoid that people who just turn up at the meeting influence voting on official matters of the working party.
Therefore the new council launched an online registration system for members of the WP. We defined different levels of membership in the registration form, you should choose, based on your self-evaluation, which type of membership you are applying to.
Levels of membership:
- Full membership: you are an expert in the field of juvenile scleroderma. This includes the right to vote for the board and the right to vote at Full membership meetings.
- Supportive membership: you have special interest in juvenile scleroderma. This does not include the right to vote for the board nor the right to vote at Full membership meetings.
- Trainee: trainees are welcome to register as trainees.
PReS established working parties for rare pediatric rheumatic diseases, including Scleroderma.
The objective of these Working Parties is to bring together clinical experience, therapeutic trials and research activities and formulate strategies to increase knowledge and perform therapeutic trials.
The purpose of these group is to facilitate communication and collaboration. The Scleroderma WP is open to all PRES members (physicians, health professionals) with special interest in scleroderma. We positively encourage patient’s representatives to register and actively participate in all efforts of this working party.
This working party is open to any new applicant.
The online registration sheet can be found by clicking on this link.
Rebuilding of PRES website
A brief summary of this report, including the ideas of new communication channels and online registration, was presented at the annual general meeting of PRES and gathered great interest. Rolando Cimaz offered harmonization of our aims to improve the online presence of the WP with the new PRES website. We are going to submit our propositions to the research committee for consideration.