ISSAID News

ISSAID is excited to launch the new Dr. Dan Kastner Award and call all ISSAID young investigators to apply.

The award of € 5,000 aims at supporting a collaborative project between two independent institutions with the aim of acquiring or disseminating knowledge. Young investigators from all continents are warmly invited to submit their application before 26 February 2024.

Submit your application here: https://form.jotform.com/233113907721046

Criteria and timeline for the application are available HERE

Autoinflammatory Awareness Month-Coming Together 2023! Celebrating 8 yrs

Register for the free webinar on Saturday, August 26, learn about autoinflammatory diseases, PFAPA, TNFAIP3/HA20, Adult and pediatric care, unclassified /SURF, breakout rooms & awareness fun!

Register here

Date and time: Jun 13th, 4:30-6pm (CET)

The PReS MAS/sJIA working party core team invites you to join the 2nd virtual WP meeting of 2023!

This time we will skip project-based discussion as we all will meet already in September for an inperson WP meeting at the annual PReS congress in Rotterdam! Instead, we will have more time to discuss with our two invited outstanding speakers on the content of their educational lectures.

We are thrilled to host Dr. Pui Lee (Boston, USA), talking about Implication of mTOR in sJIA pathogenesis and Dr. Randy Cron (Birmingham, USA), discussing Hyperinflammation in HLH. The rheumatologist’s perspective.

Please join us, we are looking forward to great presentations and a lively discussion!

REGISTER: https://form.jotform.com/231316175510345 

Over the course of the past four days, more than 356 participants from over 43 countries convened in Toronto to engage in a dynamic exchange of knowledge and ideas, ultimately striving to push the boundaries of the field forward.

We extend our sincerest thanks to all participants for being part of ISSAID 2023.

We would also like to thank the speakers, presenters, abstract submitters, moderators, and committee members for their invaluable contributions to advancing the conversation on systemic auto-inflammatory diseases.

It was fantastic to meet in Toronto, catch up with old friends, and build new partnerships for the future. We truly hope you enjoyed yourself and look forward to seeing you at our next Meeting.

The ISSAID steering committee invites ISSAID members to submit a proposal to host the 2025 ISSAID congress.

Any member interested in hosting the 2025 congress should submit a formal proposal to the steering committee no later than 30 January 2023.

>>Read more

Register for the free, virtual Saturday, August 27th program with translation–featuring expert autoinflammatory doctors, a special children’s program with Project Sunshine, fun videos and breakout rooms for various diseases! 

Registration: https://www.eventbrite.com/e/autoinflammatory-awareness-month-coming-together-2022-registration-401997594627

More on the Autoinflammatory Month

Application deadline: 12 September 2022

We are pleased to invite you to attend the 2^nd Winter School of the International Society of Systemic Autoinflammatory Disease (ISSAID).

This interactive programme is primarily aimed at junior physicians, residents and fellows. During 3 days, you will learn from expert physician-scientists on the recognition, pathophysiology and management of the spectrum of systemic autoinflammatory diseases (SAID) including Beçhet disease, interferonopathies, IL-1 mediated diseases etc.

Read more

Dear ISSAID Members and colleagues

The steering committee is very pleased to open for the first time, a call for application for travel grants to attend The Crafoord Symposium in Polyarthritis: Autoinflammatory diseases.

This symposium will be held in Stockholm in Spring 2022 (exact date to be announced soon), when Dan Kastner will receive the Crafoord Prize.

This travel grant is open to all clinicians, researchers, and trainees in the field of systemic auto-inflammatory diseases living in a low resource country (low-, lower-middle or upper middle-income country, following the World Bank classification).

Applicants must fill in the application form below before Friday 28th February 23h59 Central European Time.

The ISSAID Travel Grant consists of a reimbursement of your travel and accommodation expenses for up to € 500, upon production of the receipts.

Applicants will need to briefly explain why they need support and how they will benefit from the attendance to this symposium.

Apply here

It is strongly recommended that applicants book a refundable flight and accommodation – and obtain adequate coverage for travel, health and accident insurance. In the event of a cancellation or postponement of the symposium, ISSAID may at its entire discretion pay in full or partially the travel grant, and shall be under no liability to the Travel Grant recipients in respect to any actions, claims, losses (including consequential losses), costs or expenses whatsoever which may be brought against or suffered or incurred by the Travel Grant Recipients, as the result of the happening of any such event.
 
Please review the information to travel to Sweden on the following official website.

Thank you for your attention and we remain at your disposal should you have questions.

Best regards
 
ISSAID Secretariat

Dear Colleagues and Friends,

We are appalled and deeply sadden to share with you the terrible news that Rolando Cimaz passed away very suddenly last Saturday, 29th January 2022.

Rolando was a very talented paediatric rheumatologist and an extraordinarily good colleague and friend for many of us for many years.

After his graduation from Milan University in 1987, he obtained his specialization in Paediatrics in 1991 and in Rheumatology in 2003. Following formative experiences training in both the USA, in Dallas and in France, in Lyon, he developed Paediatric Rheumatology in Florence and, in the recent years, was the head of Paediatric Rheumatology at Gaetano Pini Hospital, Milan and Professor of Rheumatology at the University of Milan, Italy. In the last few months ago, he also became President of the Italian Paediatric Rheumatology Society.

Rolando had a remarkable clinical and scientific career publishing very widely. He acted as coordinator or collaborator in a significant number of international research and educational activities. Beside many aspects of paediatric rheumatology, Rolando provided seminal studies in the field of autoinflammatory diseases, especially in Blau syndrome, Behçet's syndrome and Kawasaki disease.

Anyone who had the privilege of working with him will always remember his contagious enthusiasm and his incredible commitment to obtaining the most rigorous scientific results, whilst never losing his equally infectious sense of humour.

The ISSAID community would like remember Rolando as a very good colleague and friend.

Our deepest condolences go to his wife Antonella and to his children Federico and Beatrice.

Grazie Rolando.

The ISSAID Steering Committee

PRES update regarding COVID-19 vaccination in children with rheumatic diseases

Update December 2021

Covid-19 in rheumatic patients

In general, the occurrence and clinical presentation of COVID-19 among children with rheumatic diseases (RD) does not differ from that of the general population; Studies analyzing the risk-factors for hospitalization among 3,000 adult patients with RD from 40 countries, based on data from the Global Rheumatology Alliance, found an increased risk for hospitalization (46%) and death (9%) among SLE and vasculitis patients. The major risk-factors for hospitalization were history of cardiovascular disease, Afro-American, Hispanic or Asian origin, and prednisone dose of > 10 mg/day. These studies suggested a protective role of TNF inhibitors and/or synthetic DMARDs regarding hospitalization (1-3).

Covid-19 in pediatric rheumatic  patients

The European Registry collected data on 376 pediatric RD patients infected with COVID-19; the majority had JIA, 164 poly-articular and 115 oligo-articular subtypes. Initial outcome data from the registry are very reassuring, with only 1 in 20 patients hospitalized. Due to the database design and inherent reporting bias, this is likely an overestimate; suggesting that overall outcomes among this population appear to be generally good, with mild infection. As more reports are added to the database, further exploration of drug- and disease-specific outcomes will become available (4).

Covid-19 complications in children without RD

Regarding healthy children, multisystem inflammatory syndrome (MIS-C) resembling Kawasaki disease was described following COVID-19 (5), in most cases involving the heart with multisystem inflammation, shock and multi-organ failure (6).

Chronic COVID-19 syndrome was described in children, similar to what is seen in adults. Data from an Italian registry describe that more than half of the children recovering from COVID-19 had at least one ongoing symptom 120 days after the disease, and 43% experienced symptoms during daily activities. Major symptoms were tiredness, musculoskeletal pain, headache, insomnia, difficulty in breathing and palpitations, similar to those observed in the adult population (7). Data from the UK show that 13% of children ages 2-11 years and 14% of children ages 12-16 years had ongoing symptoms 5 weeks after their primary COVID-19 disease. This means that 1 of every 7-8 children with COVID-19 had ongoing symptoms (8).

A review summarizing data from several countries, analyzed 1,475 cases of children hospitalized with COVID-19. Among them, 615 (42%) had moderate or severe disease (9). Still, the disease is present in children, and hospitalization in adolescents 12-17 years was reported (10).

Currently, as COVID-19 cases are declining in some countries, primarily due to high vaccination rates in adults, the disease age distribution has changed: the highest COVID-19 incidence is seen in children and adolescents.

In addition, closing schools and kindergartens during the pandemic caused psycho-social and educational harm to children and adolescents, including anxiety, eating disorders, behavioral changes, decreased ability to study and concentrate, and increased violent and delinquent behaviors (11).

All the above suggest significant morbidity in children due to the pandemic, and might affect vulnerable pediatric patients with RD.

As the pandemic is ongoing, it is possible that COVID-19 cases may increase substantially in the setting of low vaccination rates and/or high transmissibility of new variants (for example, the new delta or Omicron variants), affecting mainly the unvaccinated pediatric population.

Covid-19 vaccines

In late 2020, the results of the Phase 1/2 and Phase 3 research on the efficacy and safety of vaccines developed by Pfizer (BNTb262) and Moderna (mRNA-1273) were published; reporting an efficacy of about 95%. Cumulative data continue to show efficacy and safety.

The EULAR COVID-19 Vaccination (COVAX) Registry is an observational registry that includes 1,519 adult patients with rheumatic and musculoskeletal diseases who were vaccinated against COVID-19. The safety profiles for COVID-19 vaccines in RD patients were reassuring. Most adverse events were the same as those in the general population: non-serious and involved short-term local and systemic symptoms. Only 0.1% reported severe adverse events. Most patients tolerated vaccination well, with rare reports of RD flare (5%; 1.2% severe) (12).

A large, prospective, multicenter study investigated immunogenicity, efficacy, and safety of the COVID-19 vaccination among 686 adults with RD and 121 controls. Vaccination resulted in an adequate immunogenic response with an acceptable safety profile in most patients with RD. Immunogenicity was severely impaired by rituximab and mildly impaired by methotrexate. Post-vaccination disease activity remained stable in most patients (13). A study examined the humoral response of 264 adult rheumatic patients following vaccination. A good humoral response was seen in 86%, with minor vaccine-related side-effects and no effect on the rheumatic disease (14).

Real world observational data has been collected on 138 patients aged over 16 years with auto inflammatory diseases receiving long-term biologic therapies. The case mix included CAPS, Schnitzlers Syndrome, TRAPS, recurrent pericarditis, FMF, MKD, AOSD, Cattleman’s disease and VEXAS, 93% were on anti IL-1 agents, 54% received the adenoviral vector AstraZeneca vaccine and the remained received the Pfizer BioNTech mRNA vaccine. Systemic upset mimicking a disease flare was reported by 18% but both vaccines were well tolerated, with no serious adverse events. The reported local and systemic side effects were self-limiting, required no change in management of their autoinflammatory disease, and were consistent with those reported in trials (ref DOI: 10.1093/rap/rkab043) . Unpublished follow up data now includes a total of 320 vaccine doses with another 31 patients being vaccinated and 48 patients receiving booster doses with similarly reassuring outcomes.

These studies and additional data confirm that most DMARDs can be safely continued during vaccination. Withholding treatment with mycophenolate and abatacept, especially when combined with methotrexate, may be considered.

Clinical trial data (15), as well as data from a vast vaccination effort in Israel (16) show that vaccination of people 16 years and older is safe and has excellent efficacy, around 95% in preventing disease.

In a multinational, placebo-controlled trial with 2,260 adolescents, the immunogenicity, efficacy, and safety profiles observed in children ages 12-15 was similar to that of young adults. Adverse events were mild, mainly local reactions, pain at the injection site. Systemic side effects – mainly weakness, headache and chills were mild and resolved within 24-48 hours. No major side effects were reported (17).

In addition to preventing COVID-19, the vaccine prevented asymptomatic infections with an efficacy of 80%-90% (18) and reduced the viral load (19). This means that in addition to its excellent effect on reducing the disease, the vaccine limits the infective ability of the virus.

Based on clinical studies, several regulatory agencies extended approval for the vaccine to the age of 5, including authorities in Canada, USA-Advisory Committee on Immunization Practices (ACIP) (FDA approval), the UK, and the European Union EMA (20-22).

Vaccine and Myocarditis

There are reports of increased risk for myocarditis following vaccination (23-25). These are rare, given the hundreds of millions of vaccine doses administered, and have been reported administration of the mRNA COVID-19 vaccine, particularly amongst male adolescents and young adults more often after getting the second dose, and typically within several days after COVID-19 vaccination. Most patients responded well to treatment and rest, and had an excellent outcome. In 95% of cases, the symptoms were mild and resolved quickly. According to the Centers for Disease Control and Prevention (CDC), 300 cases of myocarditis and pericarditis (inflammation of the heart) were documented among the 20 million adolescents and young adults vaccinated in the USA (23). From extrapolation of the known reported rate of myocarditis in the 16-19 years old age group, the risk is about 1:6,000 in boys after receiving the second dose. In 95% of cases, symptoms are mild and resolve quickly. The CDC and ACIP continues to recommend COVID-19 vaccination for everyone 12 years of age and older, within the context of COVID-19 illness and related, possibly severe complications (23).

Vaccines and MIS-C

The benefits of COVID-19vaccination following   MIS-C  outweighs the theoretical risk of new MIS-C.

The PRES WPs are actively collecting data on MIS-C  cases  and MIS-C  children who were vaccinated with the Covid vaccines following their MIS-C; the data demonstrates safe outcome. It is advised to register patients in the database.

link to the survey: https://www.surveymonkey.com/r/KJCGVZP

The international registry HyperPED-COVID, is  a coordinated international action involving PRES, ESID, ISSAID and RITA-ERN , is collecting data of patients with MIS-C and will include data on  the safety and efficacy of Sars-Cov2 vaccines in these patients.

Link to the registry : https://www.printo.it/projects/ongoing/31

Conclusions

To summarize, it seems that the vaccine is as safe and effective for children with rheumatic diseases, as it is among the healthy pediatric population. It seems that despite the changing variants of the virus, the Covid-19 vaccine is still highly effective. Data are still being gathered daily, but so far there is no evidence of disease flare following vaccination. The risk for myocarditis is low. Vaccination should be considered for each child separately, based on the known COVID-19 status in a specific country. For children recovering from COVID-19, vaccine can be given no sooner than 3 months after the disease resolved.

Summary of PRES recommendations

Updated December 2021

•       The risk and morbidity of acquiring COVID-19 appears to be relatively similar among healthy children and those with rheumatic diseases, pending prospect data collection

•       The new COVID -19 vaccines are approved by various health authorities for patients 5 years of age and older, and are recommended for pediatric rheumatic patients, as well.

•       PRES recommends that paediatric rheumatology patients should be vaccinated against COVID-19 using vaccines approved by relevant national health authorities for children in this age group.

 When using prednisone above 20 mg/day or above 0.5mg/kg/day consult the rheumatologist.

•       It is advised to consult your pediatric rheumatologist to assess your disease activity and medications before deciding about vaccination.

•       It is important to establish registries regarding the efficacy, immunogenicity and safety of COVID-19 vaccines for patients with pediatric rheumatic diseases.

•       The PReS vaccination study group is conducting an ongoing registry study that aims to evaluate the safety and immunogenicity of the COVID-19 vaccines among patients with childhood RD. So far there are no safety concerns following available data on about 100 patients.

•       It is advisable to adhere to the annual flu vaccine however; consider not  to give  the influenza vaccine together with the COVID-19 vaccine (best 2 weeks apart).

•       The vaccine will most likely protect the patient from getting a severe course of COVID-19, but it is still possible that vaccinated people can carry the virus and be contagious to others. Therefore, vaccinated patients should still wear masks and practice physical distancing, according to the local health guidelines.

•       A child who has recovered from COVID-19 can receive a vaccine at least 3 months after the day of full recovery. This is valid for the first vaccine dose as well as the second dose. In situations where a child had COVID-19 after receiving the first dose, the second dose can be given at least 3 months following the day of full recovery.

•       According to the local health authority a 3ed booster vaccine is recommended.

•       Following MISC it is suggested to vaccinate according to the local health authorities

•       Following MISC It is recommended to vaccinate after 6 months, following full clinical recovery, and normal cardiac function. If IVIG was not given as MISC therapy, consider to vaccinate after 3 months.

•       For children who had MISC following Covid vaccine, it is recommended to withhold further vaccination

References

1) Gianfrancesco M, Yazdany J, Robinson PC. Epidemiology and outcomes of novel coronavirus 2019 in patients with immune-mediated inflammatory diseases. Curr Opin Rheumatol United States; (2020) 32:434-40.

2) Pablos JL, Abasolo L, Gracia JMA-, Blanco FJ, Blanco R, Castrejón I, et al. Prevalence of hospital PCR-confirmed COVID-19 cases in patients with chronic inflammatory and autoimmune rheumatic diseases. Ann Rheum Dis (2020); 217763.

3) Gianfrancesco M, Hyrich KL, Al-Adely S, Carmona L, Danila MI, Gossec L, et al. Characteristics associated with hospitalisation for COVID-19 in people with rheumatic disease: data from the COVID-19 global rheumatology alliance physician-reported registry. Ann Rheum Dis. (2020) 79:859–66.

4) https://www.eular.org/eular_covid19_database.cfm

5) Mary Beth F. Son MB, Nancy Murray N Friedman K, et al. Multisystem inflammatory syndrome in children — initial therapy and outcomes. N Engl J Med. (2021) Jun 16. doi: 10.1056/NEJMoa2102605.

6) Feldstein LR, Tenforde MW, Friedman KG, Newhams M, Rose EB, Dapul H, et al. Characteristics and outcomes of US children and adolescents with Multisystem Inflammatory Syndrome in Children (MIS-C) compared with severe acute COVID-19. JAMA. (2021) Mar 16;325(11):1074–1087.

7) Buonsenso D, Munblit D, De Rose C, Sinatti D, Ricchiuto A, Carfi A, et al. Preliminary evidence on Long COVID in children. Acta Paediatr. 2021 Jul;110(7):2208-2211.

8) Ludvigsson JF. Case report and systematic review suggest that children may experience similar long-term effects to adults after clinical COVID-19. Acta Paediatr. (2021) Mar;110(3):914–921.

9) Liguoro I, Pilotto C, Bonanni M, Ferrari ME, Pusiol A, Nocerino A, et al. SARS-COV-2 infection in children and newborns: a systematic review. Eur J Pediatr. (2020) Jul;179(7):1029–1046.

10) Havers FP, Whitaker M, Self JL, Chai SJ, Kirley PD, Alden NB, et al. Hospitalization of Adolescents Aged 12–17 Years with Laboratory-Confirmed COVID-19 — COVID-NET, 14 States, March 1, 2020–April 24, 2021. MMWR Morb Mortal Wkly Rep. (2021) Jun 4;70(23).

11) de Figueiredo CS, Sandre PC, Portugal LCL, Mázala-de-Oliveira T, da Silva Chagas L, Raony Í, et al. COVID-19 pandemic impact on children and adolescents’ mental health: Biological, environmental, and social factors. Prog Neuropsychopharmacol Biol Psychiatry. (2021) Mar 2;106:110171.

12) Machado, S. Lawson-Tovey, K. Hyrich et al. Covid-19 vaccine safety in patients with rheumatic and musculoskeletal disease. Ann Rheum Dis. (2021) June; 80 (Supplement 1):199. 

13) V. Furer, T. Eviatar, D. Zisman et al. Immunogenicity and safety of the BNT162b2 mRNA COVID-19 vaccine in adult patients with autoimmune inflammatory rheumatic diseases and in the general population: a multicentre study. Ann Rheum Dis. (2021) Jun 14: 220647.

14) Braun-Moscovici Y, Kaplan M, Braun M, Markovits D, Giryes S, Toledano K, Tavor Y, Dolnikov K, Balbir-Gurman A. Disease activity and humoral response in patients with inflammatory rheumatic diseases after two doses of the Pfizer mRNA vaccine against SARS-CoV-2. Ann Rheum Dis. (2021) Jun 18:annrheumdis-2021-220503.

15) Pfizer-Biontech Covid-19 Vaccine (BNT162, PF-07302048) Vaccines and related biological products advisory committee briefing document. https://www.fda.gov/media/144246/download

16) Dagan N, Barda N, Kepten E, Miron O, Perchik S, Katz MA, et al. BNT162b2 mRNA Covid-19 Vaccine in a Nationwide Mass Vaccination Setting. N Engl J Med. (2021);384(15):1412-1423.

17) Frenck RW, Klein NP, Kitchin N, Gurtman A, Absalon J, Lockhart S, et al. Safety, Immunogenicity, and Efficacy of the BNT162b2 Covid-19 Vaccine in Adolescents. N Engl J Med. (2021) May 27; DOI: 10.1056/NEJMoa2107456

18) Tande AJ, Pollock BD, Shah ND, Farrugia G, Virk A, Swift M, et al. Impact of the COVID-19 Vaccine on Asymptomatic Infection Among Patients Undergoing Pre-Procedural COVID-19 Molecular Screening. Clin Infect Dis. (2021) Mar 10; ciab229. doi: 10.1093/cid/ Online ahead of print

19) Levine-Tiefenbrun M, Yelin I, Katz R, Herzel E, Golan Z, Schreiber L, et al. Initial report of decreased SARS-CoV-2 viral load after inoculation with the BNT162b2 vaccine. Nat Med. (2021) May;27(5):790-792.

20) Coronavirus (COVID-19) Update: FDA Authorizes Pfizer-BioNTech COVID-19 Vaccine for Emergency Use in Adolescents in Another Important Action in Fight Against Pandemic | FDA [Internet]. [cited 2021 Jun 3]. Available from: https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-pfizer-biontech-covid-19-vaccine-emergency-use

21) The MHRA concludes positive safety profile for Pfizer/BioNTech vaccine in 12- to 15-year-olds - GOV.UK [Internet]. [cited 2021 Jun 5]. Available from: https://www.gov.uk/government/news/the-mhra-concludes-positive-safety-profile-for-pfizerbiontech-vaccine-in-12-to-15-year-olds.

22) First COVID-19 vaccine approved for children aged 12 to 15 in EU | European Medicines Agency [Internet]. [cited 2021 Jun 5]. Available from: https://www.ema.europa.eu/en/news/first-covid-19-vaccine-approved-children-aged-12-15-eu.

23) https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/myocarditis.html

24) Abu Mouch S, Roguin A, Hellou E, Ishai A, Shoshan U, Mahamid L, et al. Myocarditis following COVID-19 mRNA vaccination. Vaccine. (2021). Jun 29;39(29):3790-3793.

25) Snapiri O, Rosenberg Danziger C, Shirman N, Weissbach A, Lowenthal A, Ayalon I, et al. Transient Cardiac Injury in Adolescents Receiving the BNT162b2 mRNA COVID-19 Vaccine. Pediatr Infect Dis J. (2021) Jun 2. doi: 10.1097/INF.0000000000003235. Online ahead of print.

It is still time to register to the ISSAID Periodic Congress, built in the form of a scientific series.

Register now and benefit:

• from 2-4 hours of scientific eduaction per month
• access to recorded sessions until 31^st December 2021
• networkign opportunities with colleague

Register now

Conscious that some colleagues may need more time to submit their abstract, the steering committee has decided to extend the deadline until 15^th April. Please be reminded that accepted abstracts will be published in a supplement of Pediatric Rheumatology Journal.

Submit now

Submission deadline: 31 March 2021

Delegates, who would like to present their work at the Periodic Congress, either orally or as an e-poster, are invited to submit an abstract for consideration by the Abstract Grading Committee. 

>> Read more

PRES update regarding COVID-19 vaccines in pediatric rheumatic patients

Statement endorsed by ISSAID

(Published on 30 December 2020)

• The risk and morbidity of acquiring COVID-19 is relatively similar among healthy children and those with rheumatic diseases.

• The new COVID -19 vaccines are approved by various health authorities for patients 16 years of age and older, and are recommended for pediatric rheumatic patients above those ages.

• It is recommended to vaccinate patients 16 years of age and older with low disease activity or those in remission, who are treated with methotrexate and biologic therapies.

• It is advised to consult your pediatric rheumatologist in order to assess your disease activity and medications before making a decision regarding vaccination.

• It is important to establish registries regarding the efficacy and safety of COVID-19 vaccines for patients with pediatric rheumatic diseases.

• It remains important to be vaccinated against influenza; however, the influenza vaccine should not be given together (best 2 weeks apart) from the COVID-19 vaccine.

• Vaccine will most likely protect the patient from getting severe course of COVID-19, but it is still possible that vaccinated person could carry the virus and be contagious to others. Therefore, vaccinated patients should still be wearing masks and practicing physical distancing.

The ISSAID Steering Committee would like to share its best wishes for the new year. May 2021 bring you good health, joy and success.

We are excited to start this year with new projects:

• the ISSAID Winter School
• ISSAID 2021 periodic congress
• continuation of webinar series

Stay tuned for more details!

ISSAID is pleased to launch it 2020 webinar series aimed at doctors, health professionals who have an interest in systemic auto-inflammatory diseases.

Further information here.

(Adapted from the EULAR recommendations)

1. Be updated and follow the individual country’s Ministry of Health/National public health care body’s recommendations.

2. Ensure you meticulously follow all hygiene recommendations. Please note that the new coronavirus may remain viable for hour or days on many surfaces such as handles, doorknobs, light switches, mobile phones, computer keyboards, remotes, keys, elevator buttons, toilets, sinks, tables, hard-backed chairs, etc.
Simple measures are likely to help to preserve your health and that of your family and friends:

• Wash your hands very regularly for at least 20 seconds using soap and water. Dry hands thoroughly afterwards.
• Try to avoid touching your face.
• Coughing or sneezing should be into an elbow or tissue paper and the latter should be discarded safely.
• Use disposable tissues.
• Wear a mask when you are ill; if there are no symptoms it is not necessary to wear a mask. The mask cannot completely prevent virus transmission, but it is a good reminder of not touching your face and serves to warn others that you may not be well.
• Practice sensible social distancing especially from people who appear to be ill, e.g. coughing or sneezing. One meter is recommended.
• We should greet each other without shaking hands, and avoid hugs

3. At the moment for all patients with Autoinflammatory diseases on medication, we recommend to continue all therapies as usual.

4. Don’t stop your medications including colchicine and biologics, without consulting your doctor. This may cause a flare of your autoinflammatory disease.

5. If you are on corticosteroid therapy - consult your doctor regarding possible dose adjustment.

6. Patients in isolation or quarantine (without symptoms) should continue therapy as usual.

7. In case of fever and suspicion of infectious diseases follow your national advice for access to health care and to test for Covid-19. In the meantime, continue Colchicine and, if taking biologics, get in touch with your treating physician for guidance.

8. In the event that you have a routine visit consider to ask your primary care physician, or referral doctor  if this is essential, or can be safely delayed, or if it can be performed by telephone or some other remote device. This facility may vary in availability across different health care settings.

9. For all individuals, including patients with pediatric rheumatic diseases. Scrupulously maintain all the measure of social distance.

10. Wishing you good health and back to regular track soon.

See also EULAR website - EULAR website https://www.eular.org/eular_guidance_for_patients_covid19_outbreak.cfm

Due to the current COVID-19 situation, the first ISSAID Summer School, which was set to take place from 29 June to 1 July in Italy, will be postponed to a later date.

All young doctors or trainees who are still interested in attending the Summer School, are welcome to review the general themes and program outlines below. 

Expand your knowledge through cases presented by attendees and discussed by faculty members, with a focus on the main take-home messages for each case. The faculty will also lead Interactive cases, which include tricky presentations and differential diagnoses.

Workshops will focus on the interpretation of genetic tests, approaches to gene findings, evaluation of disease activity, and management issues.

A newly proposed date, city, and application deadline will be announced soon.

Karen Durrant has been co-opted to sit with the steering committee as patients advocate.

She is a Registered Nurse specializing in pediatrics, with a background in clinical research and nursing instruction, in addition to inpatient nursing and critical care. Karen founded, and currently leads the Autoinflammatory Alliance a non-profit organization as an advocate for patients with rare autoinflammatory diseases. In this role she also has developed a number of educational materials, and collaborates on projects with expert doctors worldwide to help improve awareness, care and treatment for autoinflammatory diseases.

ISSAID is organizing its first summer school which will be held in Italy from 29 June to 1 July. It is aimed at young doctors or trainees. Candidates who wish to attend should submit their application before 31 March 2020.

Further information will be announced soon.