News

Attendees

• 260 attendees

Welcome – E-Congress

All welcomed by the PReS Executive and Council.

• Despite the enormous challenges brought about by the covid-19 pandemic, recognition and gratitude to all for turning things around to deliver an outstanding E-Congress.

• Specific thanks to the Congress Scientific Committee, Lucy Wedderburn (Chair) and Chris Scott (Deputy Chair), Pavla Dolezalova (for initial preparations of the planned face-to-face Congress in Prague), to colleagues in MCI, especially Heather Shepperd and Coralie Deleage, to Lovro Lamot and the EMERGE team for an outstanding YIM, and to all the Council, WP2.0 Chairs, and all who contributed to making the E-Congress such a success.

Total attendees: 1,470 from 84 countries with over 700 presentations

1. AGM Minutes - PRES Association, 13th June 2019, Madrid (2. PReS AGM Minutes - 130619 Final)
   Taken as read, approved, and all actions arising complete (pending updates at meeting today)

2. PRES Mission and PReS 2025 Initiatives

• President’s update and overview (3. PRES Mission - 2.0 Update)
  Berent Prakken gave a brief overview and summary of the PReS Mission, PReS 2025 Initiatives, and his thanks for all who have contributed to the extensive work and progress during the past 4 years. He then acknowledged and passed over to the new PReS President.

• New President update
  Angelo Ravelli acknowledged the enormous contribution and leadership shown by Berent over the past 4 years, thanked him for all he has done to develop the PReS Mission, and confirmed his own commitment to continue to work with the Council, all members, all partners and all those committed to help deliver the PReS Mission and PReS 2025 Inititaives for the benefit of children, young people and their families (see Appendix 1 for Angelo’s closing speech at the PReS 2020 E-Congress)

3. Report from the out-going Treasurer (Angelo Ravelli; 4. PReS Society Budget 2020 - DRAFT v9 220920)

• PReS Congress – Accounts

  • Current income estimated: €410,006; current expenditure estimated: €312,787; current estimated balance: €97,218. As Congress on-going, so final accounts will be collated in due course and included in the final PReS 2020 Accounts

• PReS Accounts and Budget;

  • 2019 Accounts: Expenditure (€190,962); Income (€102,636); Balance (-€88,325)

  • Balance (as of 24/09/2020): €339,523.25 + €141,609.48; CHF161,309.94

  • Reserve (c.€300,000; 2-3 years minimum annual expenditure) + Reserve for potential VAT-related issues (c.€100,000)

  • 2020 Budget – currently on-going: Estimated Income: €130,860 (pending final Congress accounts and membership); Estimated expenditure: €159,796 (pending current commitments and Congress accounts); Estimated budget: -€28,936 (pending current commitments and outcome of congress). Noted that many planned activites had been suspended in light of the covid-19 pandemic

  • 2021 Budget: Draft budget being prepared, but not presented due to enormous uncertainties in light of the current situation associated with the covid-19 pandemic

  • All accepted and approved unanimously.

• Audit of Accounts
  
  It was confirmed that the 2019 PReS Accounts had been duly audited and approved (Joost Swart and Kirsten Minden)
   

• PReS 2025 Resource Committee: Update and New Treasurer
  
  Thanks noted to the PReS 2025 Resource Committee for the success in increasing Sponsorship for the Congress, despite the challenges this year. Thanks noted to Ram for his chairmanship, who has stepped down from the role. Announced that Jelena Vojinovic, as new PReS Treasurer will be taking on the role of Chair.

• Angelo introduced Jelena Vojinovic as the new PReS Treasurer
  
  Jelena thanked everyone for the opportunity to support PReS in tbis way, and her commitment to working with the PReS Executive, council and all members and parteners in delivering the PReS Mission

4. Report from the Secretary

• PReS byelaws: Proposal
  
  Noted current PReS Byelaws approved (13/06/19)
  
  Proposal for minor change to facilitate new members to: Article 4, Membership: 2. Admissions:

• Each application must contain either a short CV or a sponsorship by one current member of the society. 

• Applications must be approved by the General Meeting of the society. The General Assembly will be informed of the new applications at the General Meeting of the society. 
  
  If no objections noted within 3 months of AGM, these changes will be made and enacted upon.

• Council members: New members / Upcoming positions
  
  Noted the change in PReS President and Treasurer (see above)
  
  Next changes in Terms of Office (elections, from AGM 2021 onwards, ‘acting’ term starting from AGM 2022)

• PReS Secretary (Member of PReS Executive: 1 year ‘Elect’ + 4 year term)

• PReS Trainee Represntative, Chair of EMERGE (Elected by EMERGE: 1 year ‘Elect’ + 3 year term)

• Current members; Admission of new members
  
  Noted now 467 members; 268 renewals since last year, 49 applications through membership portal, 150 through congress registration, from across 64 coutries world-wide. New members noted and welcomed to PReS.

• PReS 2025 Membership Stratgey 2.0: National PReS Champions
  
  Noted that the Membership Strategy 2.0 continues, led by Sefi, Jordi, Jeannette and lovro, all ideas and suggestions to forward to them.
  
  Plans for ‘PReS National champions / link persons’, especially for linking with National Societies (where they are present). Details of the process and how this will work to be distributed in due course via website and newsletter.

• PReS Congresses 2021 / 2022

• 2021: Dubrovnik (face-to-face / hybrid (TBC) or virtual if not possible to have face to face)

  • YIM: Friday 17th – Saturday 18th September 2021.

  • Congress: Saturday 18th – Tuesday 21st September 2021.

  • Chair of Scientific Committee: ‘Ram’ Ramanan (UK)

  • Deputy Chair (non-European based): Chris Scott (South Africa)

• 2022: Prague

  • YIM: Tuesday 20th – Wednesday 21st September 2022

  • Congress: Wednesday 21st – Saturday 24th September 2022

5. PReS 2025: ENCA (Wendy) - WORD Day 2020, and 2021

• Full update on activities of ENCA, work for the Congress, with Working Parties 2.0, and many other activities

• Update on (virtual) WORD Day 2020, and plans underway for WORD Day 2021 (18th March)

6. PReS 2025: Education and Training (Jordi)

• Full update from ETC, including update on representatives from 41 countries, inout into WP2.0, working with ENCA, EMERGE and HP representatives

• Launch of PReS Knowledge Examination in Paediatric Rheumatology, to develop with hope that this can take place for the first time prior to 2021 Congress in Dubrovnik

• Launch of ‘Sister Hospital’ inititaive
  
  PReS Academy (Tadej)

• Full update on Basic and Advanced Educational Courses (suspended in 2020 due to covid-19 pandemic, plans fpor 2021), PReS / ERN-RITA Webinars, EULAR / PReS online Course in Paediatric Rheumatology, EULAR / PReS Textbook of Paediatric Rheumatology, and PReS Academy Webporatl and Repository

• Specific update on proposed Basic and Advanced Educational Courses ansd PReS / ERN-RITA Webinars

7. PReS 2025: Research Strategy (Fabrizio)

• Update on plans to develop a PReS Research Strategy and Scientific Advisory Committee
  
  PReS-PRINTO Research Awards

• Round 1 (2019): 8 applications, 1 grant awarded:

  • “Cross-cultural adaptation and validation of the Localised Scleroderma Quality of Life Instrument (LoSQI) in juvenile localised scleroderma (JLS): a multicentre study of the PRES scleroderma working party in collaboration with members of the CARRA scleroderma working group”, PI Dr Clare Pain (Liverpool, UK)

• Round 2 (2020) launched, along with Nicola Ruperto (PRINTO) and Ram (PReS WP2.0 Chair) of this important strategic collaboration between PReS and PRINTO

  • Closing date: 15th December 2020

  • Details to be available on website and Newsletter

8. PReS 2025: Clinical Affairs (Sefi)

• Full update of inititaives including:

  • Covid-19 PReS guidelines

  • Website updates of important papers, year in review presentations, and may new items coming soon

  • Clinical consultations

  • PReS SHARE recommentations update, for the WP2.0 to consider

9. PReS 2025: Health Professionals (Jeanette)

• Update on the very successful re-launch of the Health Professional community across PReS, with 7- attendees at the E-Congress, 7 integrated sessions, and many more active members

• Networking with EULAR, ENCA and YIM

• Forward plan outlined for the coming year, including sub-group meetings via ‘zoom’, input into the clinical and educational activites of PReS and WP2.0

• Continuing goal to foster and increase the numbers of HP members and their engagement across PReS inititaives

10. PReS 2025: EMERGE (Lovro)

• Over 200 members of EMERGE from over 40 countries around the world

• Full update on the huge range of EMERGE-led activities and inititaives, including:

  • YIM (extremely successful this year, despite of the challenges of an E-Congress)

  • Fellowships for Clinicians and Scientists

  • Education and Courses

  • Research and Working Parties

  • Collaboration with other groups, including: EMUNET, CARRA, ENCA, etc.

  • Peer review mentoring program

  • Social Media and Newsletters

11. PReS 2025: Working Parties 2.0 (Ram)

• Update that the WP2.0 had much greater attendance this year, with >100 particpants at many (see Appendix 2)

• Continued fous on taking ahead the PReS WP2.0 model as launched following the London meeting of WP chairs, including all three ‘columns’

• Meeting of WP2.0 Chairs after the congress to review and take forward plans. All encouraged to get involved in WPs
  
  PReS – CARRA Grant launch

• New initiative, to foster direct collaboration between the PReS WP2.0 and CARRA Working Parties, aimed at early career investigators;

• €25,000, application deadline: 1st December 2020

• Details via website and Newesletter shortly

12. Partnership and Collaborations

• Update on key strategic partnerships with:

  • EULAR, with acknowledgement and thanks to Iain McInnes (President) and Hans Bijlsma (Past President and PReS Council representative) for the continued close collaboration between EUALR and PReS

  • ERN-RITA, and Nico Wulffraat

  • PRINTO (see above)

  • CARRA (see above)

  • And other key partners

13. PReS 2025: Task Forces – Update

• Noted the excellent session, available through E-Congress catch up of the Global Task Force Session (24th September 2020, 5-6pm CEST) – all recommended to see for full upoadte and how they can get involved.

• Thanks given to the PReS Task Force Leads and their continuing support for these key PReS 20205 Inititaives, namely:

  • Global Musculoskeletal Health: Chris Scott, Helen Foster

  • Global Research Task Force: Brian Feldman, Niocla Ruperto

  • Fostering the next generation of translational researchers: Annette van Royen, Johannes Roth

14. Any Other Business

• No other items.

• All thanked for attending, for their support for all of the activities summatrised by the PReS Council Members, and for their continued support for the PReS Mission and PReS 2025 Initiatives

Berent Prakken, PReS President
Angelo Ravelli, PReS Past-Treasurer / New PReS President
Michael Beresford, PReS Secretary
Jelena Vojinovic, New PReS Treasuer

Appendices

Appendix 1: Closing speech, PReS 2020 E-Congress - Angelo Ravelli, New PReS President

Dear Colleagues,

I’m extremely pleased and honored of being the new president of PReS. I guess that I don’t need to spend many words to introduce myself as most of you know me well since a long time. Let me just say that I’ve started to see children with rheumatic diseases in the early 80s and that I have, therefore, almost 40 years of experience in pediatric rheumatology care. I’ve attended all European pediatric rheumatology meetings, starting with the first one in 1993 Paris, and have witnessed the birth of PReS, in 1999 in Glasgow.

After its foundation, our society has grown fast. Let me remind you that in the 80s the international pediatric rheumatology meetings in Europe were attended by only a few dozens of people and our discipline was considered by somebody the Cinderella of pediatric subspecialties. At that time, there were virtually no medications that were effective in childhood arthritis, except aspirin and glucocorticoids, and children with the most severe forms were exposed to the risk of developing serious and nonreversible joint damage and physical disability. Furthermore, pediatric rheumatology essentially existed only in Europe and North America, there were few trained pediatric rheumatologists, and research was poor.

This scenario has changed enormously over the years. Nowadays, PReS is one of the leading pediatric societies, our annual meetings are attended by more than 1000 physicians, newer generations of smart and enthusiastic clinicians and scientists have emerged, and there are very active HPR and ENCA communities. Basic, translational and clinical research in pediatric rheumatology in Europe is now at the frontline and several important international collaborative scientific projects have been accomplished or are ongoing. A number of clinical trials have led to the registration of novel and potent medications or to the refinement of conventional therapeutic strategies. A treat-to-target approach, aiming for early disease remission, is now being incorporated in pediatric rheumatology practice. Altogether, these advances have improved dramatically the outlook of children with rheumatic diseases.

In spite of this success, we are, however, still faced by many challenges and numerous unmet needs remain. The etiology and pathogenesis of the majority of the diseases that we care for are still elusive. Although our therapeutic armamentarium expands continuously, we do not possess the cure for most illnesses. A sizeable proportion of children, particularly those with the most severe conditions, do not respond adequately to contemporary therapies. In addition, there is a lack of well-trained pediatric rheumatologists in some parts of the world. As a result, many children with rheumatic diseases, particularly those living in lower-resource countries, do not receive a qualified pediatric rheumatology care or are at risk for delayed referral. In lower-income settings, the costly biologic medications may not be accessible or affordable, which implies that several young patients in the world might not benefit from the latest therapeutic advances.

In my new role in PReS, I’m taking over Berent Prakken, who has been a great president. Succeeding to Berent is both a fortune and a challenge. It is a fortune because the society that I inherit is healthy, financially solid, and remarkably active. During his presidency, Berent has impressed a tremendous acceleration to clinical, educational and research activities, and has launched, together with the Council, a series of strategic projects, which are collectively included among the so-called “PReS 2025 initiatives”. At the same time, PReS has strengthened its cooperation with other networks, including EULAR, PRINTO, CARRA and ERN. Under Berent’s presidency, PReS has ultimately become a truly global pediatric rheumatology organization.

Replacing Berent is, however, also a challenge because he has exerted a strong, wise and illuminated leadership, which will make it difficult to keep up with him. During my term, I will do my best to continue along the road marked by Berent, by maintaining and, possibly, widening the range of activities of our society and by preserving its transparent, democratic, inclusive and concrete features. In facing future tasks, I feel comfortable because I know that I will count on the help and support of the friends that are part of the Council, who are all fully committed to the benefit of the society. Altogether, we will work hard to keep pursuing the mission of PReS, that is, to advance the care and improve the health and well-being of children and young people with rheumatic conditions.

Angelo, given at the close of the PReS E-Congress, 25th September 2020

Appendix 2: PReS Working Party 2.0 attendance at PReS Congress 2020:

Working_Party_Name	Attendance at PReS 2020 (max)
Imaging	130
Juvenile dermatomyositis (JDM)	189
Lupus working party (JSLE)	240
Macrophage Activation Syndrome (MAS)	208
Juvenile Scleroderma	145
Uveitis	180
Vasculitis	203
Autoinflammatory	308
Vaccinations	201