To the Editor:
The J Project (JP) physician education and clinical research collaboration program was established in 2004 by clinician scientists in Eastern and Central Europe (ECE) to increase awareness of primary immunodeficiency disorders (PIDs) and improve the complex care of patients with these conditions [1, 2]. By the end of 2021, 344 J Project meetings were organized (Table 1). The JP has created a collaborative, professional community of clinical immunologists, caring for more than 24,000 patients with PID and a remarkable number of joint publications [1–3].
Table 1.
J Project meetings 2004–2021
| Country | Sum | 2004 | 2005 | 2006 | 2007 | 2008 | 2009 | 2010 | 2011 | 2012 | 2013 | 2014 | 2015 | 2016 | 2017 | 2018 | 2019 | 2020 | 2021 | |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 1 | Albania | 5 | 1 | 1 | 1 | 1 | 1 | |||||||||||||
| 2 | Armenia | 4 | 1 | 1 | 1 | 1 | ||||||||||||||
| 3 | Azerbaijan | 5 | 1 | 1 | 1 | 1 | 1 | |||||||||||||
| 4 | Belarus | 8 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | ||||||||||
| 5 | B&H | 1 | 1 | |||||||||||||||||
| 6 | Bulgaria | 14 | 1 | 1 | 1 | 1 | 1 | 1 | 2 | 2 | 1 | 1 | 2 | |||||||
| 7 | Croatia | 1 | 1 | |||||||||||||||||
| 8 | Czech Repub | 14 | 1 | 1 | 1 | 1 | 2 | 1 | 1 | 1 | 1 | 1 | 1 | 2 | ||||||
| 9 | North Cyprus | 1 | 1 | |||||||||||||||||
| 10 | Egypt | 3 | 1 | 1 | 1 | |||||||||||||||
| 11 | Estonia | 2 | 1 | 1 | ||||||||||||||||
| 12 | Georgia | 4 | 1 | 1 | 1 | 1 | ||||||||||||||
| 13 | Hungary | 28 | 1 | 2 | 1 | 1 | 2 | 4 | 1 | 2 | 2 | 1 | 4 | 2 | 5 | |||||
| 14 | Iran | 18 | 1 | 1 | 1 | 2 | 2 | 2 | 2 | 1 | 1 | 1 | 1 | 2 | 1 | |||||
| 15 | Kazakhstan | 11 | 1 | 1 | 2 | 3 | 2 | 2 | ||||||||||||
| 16 | Kyrgyzstan | 5 | 2 | 2 | ||||||||||||||||
| 17 | Kosovo | 5 | 1 | 1 | 1 | 2 | ||||||||||||||
| 18 | Latvia | 5 | 1 | 1 | 1 | 2 | ||||||||||||||
| 19 | Lithuania | 6 | 1 | 1 | 1 | 1 | 2 | |||||||||||||
| 20 | Poland | 19 | 1 | 1 | 1 | 1 | 2 | 1 | 1 | 1 | 1 | 1 | 1 | 4 | 2 | |||||
| 21 | R.Macedonia | 8 | 1 | 1 | 1 | 1 | 1 | 2 | 1 | |||||||||||
| 22 | R.Moldova | 13 | 1 | 1 | 1 | 1 | 2 | 3 | 4 | |||||||||||
| 23 | Montenegro | 1 | 1 | |||||||||||||||||
| 24 | Romania | 14 | 1 | 1 | 1 | 1 | 1 | 2 | 2 | 1 | 1 | 1 | 1 | 1 | ||||||
| 25 | Russia | 58 | 1 | 2 | 1 | 3 | 4 | 1 | 4 | 4 | 2 | 2 | 6 | 5 | 9 | 15 | ||||
| 26 | Serbia | 2 | 1 | 1 | ||||||||||||||||
| 27 | Slovakia | 10 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | ||||||||
| 28 | Slovenia | 12 | 1 | 1 | 1 | 2 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | |||||||
| 29 | Tajikistan | 1 | 1 | |||||||||||||||||
| 30 | Turkey | 30 | 1 | 1 | 3 | 1 | 3 | 2 | 3 | 3 | 3 | 4 | 2 | 4 | ||||||
| 31 | Ukraine | 25 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 4 | 5 | |
| 32 | Uzbekistan | 10 | 2 | 4 | 1 | 3 | ||||||||||||||
| Edinburgh- ESID | 1 | 1 | ||||||||||||||||||
| Lisbon- ESID | 1 | 1 | ||||||||||||||||||
| Summary | 344 | 6 | 6 | 5 | 5 | 5 | 11 | 8 | 14 | 23 | 15 | 19 | 18 | 14 | 21 | 32 | 35 | 44 | 63 | |
B&H Bosnia and Herzegovina, R Macedonia Republic of North Macedonia, R Moldova Republic of Moldova
While most of us live in a peaceful environment, the world is now full of conflict and unsolved legacies, and the area covered by our JP network is no exception. Many of these disputes concern politics and religion, culture and traditions, and some relate to the borders of countries, the citizens of which simply wish to live in peace. Those of us working in medicine, presumably with responsibility only for the physical and mental health of those we treat, are suffering from the consequences of local and global conflicts. We remember when many of our colleagues decided not to attend the 2nd J Project Congress in Antalya, Turkey, because of the conflict between their countries at the time. This is why we formulated a succinct message delivered at the 2nd J Project Congress in Antalya, reiterating that our meeting was dedicated to patients and peace. But, after 18 years of working together in the PID or inborn errors of immunity (IEI) field, the loudest and strongest message to come out of the JP is that we are still together and growing in terms of the area covered, the countries and centers included, and we are developing across existing differences of various kinds between the 32 countries now involved in the project [1]. We are not alone in this endeavor. Indeed, we collaborate closely with the European Society for Immunodeficiencies, the Jeffrey Modell Foundation, and pharmaceutical companies, which provide educational grants for the organization of JP meetings [2].
We are not immune from the problems of a lack of engagement with this wonderful joint project, albeit in only a few countries or a few centers in some countries. We continually try to persuade the less active centers to re-engage in the Project and to bring them back into the fold. We hope to convince them that the JP exists primarily to help those who are lagging behind, and that the reward for our efforts is the diagnosis and treatment of more and more patients throughout Central Europe and Eurasia, including, recently, in Siberia and the Far East of Russia [3, 4]. Advanced centers should be keen to find new ways to help the less developed centers and to raise the global level of patient management and understanding of the importance of IEI throughout medical fields.
In a more global sense, the JP provides us with an excellent example of how to overcome differences and conflicts between countries and nations and to build collegiality and friendship through a focus on professional collaboration in our growing community, even during times of strife when tensions surround us. A prominent expression of our strength and reach is the increasing number of PID-focused meetings (Fig. 1), reflecting considerable ambition and enthusiasm and paving the way for improvements in the diagnosis and treatment of patients in our still largely neglected but rapidly developing field [5].
Fig. 1.
a J Project (JP) meetings were organized between 2004 and 2021 in Eastern and Central Europe (ECE), Egypt, and part of Asia. The cumulative number of meetings was 344 giving an average of 19 meetings/year. The dynamic increase over the past 5 years was remarkable and did not correlate with the number of JP member countries (27 and 32 countries in 2017 and 2020, respectively). Rather, it may represent the devotion of leaders of JP centers in member countries to provide a better care for patients with PID. Over the past 2 years, however, the particular increase could be attributed to opening the scope of the JP to unique mechanisms of coronavirus infectious disease 2019 (COVID-19) in PID patients infected with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2). A large number of JP centers have joined forces with the COVID Human Genetic Effort program coordinated by the Rockefeller University and the National Institute of Health to extend participation in the COVID-19 research to the area of the JP. b JP meetings organized in 25 countries in 2021. An outstanding number of JP events were organized in Russia having the largest population among countries involved in the JP in ECE. However, both Hungary (estimated population (ep), 9,6 million) and Ukraine (ep, 43 million) organized 5 meetings, whereas 4 meetings were organized both in Turkey (ep, 84 million) and in the Republic of Moldova (ep, 2,6 million) suggesting the lack of correlation between meeting number and country population. In 11 countries one JP event were reported and 7 countries had no meeting at all. These data suggest remarkable differences in ambition or interest of leaders of JP countries in the JP at least in the past year. It is also likely that the JP is only one of the PID-related activities in the countries that have joined the Project over the past 18 years
Acknowledgements
We thank the patients and parents of the patients for helpful collaboration and trust. We thank the healthcare professionals, especially clinicians and laboratory experts who supported the JP centers.
The J Project Study Group affiliations
1. Abolhassani, Hassan; Research Center for Immunodeficiencies, Pediatrics Center of Excellence, Children’s Medical Center, Tehran University of Medical Sciences, Tehran, Iran
2. Avcin, Tadej; Children’s Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia
3. Bahceciler, Nerin (Nicosia, North Cyprus); Near East University, Division of Pediatric Allergy & Immunology, Nicosia, North Cyprus
4. Bataneant, Mihaela; Clinical Emergency Paediatric Hospital Louis Turcanu, Timisoara, Romania
5. Belevtsev, Mikhail; Immunology Department, Belarussian Research Center for Pediatric Oncology, Hematology and Immunology, Minsk, Belarus
6. Bernatowska, Ewa; Department of Immunology, The Children’s Memorial Health Institute, Warsaw, Poland
7. Bolkov, Mikhail; Institute of Immunology and Physiology of the Ural Branch of the Russian Academy of Sciences, Yekaterinburg, Russia
8. Bondarenko, Anastasia; Pediatric Infectious Disease and Pediatric Immunology Department, Shupyk National Healthcare University of Ukraine Kiev, Ukraine
9. Boyarchuk, Oksana; Department of Children’s Diseases and Pediatric Surgery, I.Horbachevsky Ternopil National Medical University, Ukraine
10. Erdős, Melinda (Budapest, Hungary); Primary Immunodeficiency Clinical Unit and Laboratory Department of Dermatology, Venereology and Dermatooncology, Semmelweis University, Budapest, Hungary
11. Galal, Nermeen; Pediatrics Department, Faculty of Medicine, Cairo University, Giza, Egypt
12. Iritsyan, Sevan; Department of Hematology and Transfusion Medicine, National Institute of Health, Yerevan, Armenia
13. Ismaili-Jaha, Vlora (Pristina, Kosovo); Pediatric Clinic, Department of Gastroenterology, University Clinical Center of Kosovo Faculty of Medicine, University of Prishtina “Hasan Prishtina”, Pristina Kosovo
14. Kelecic, Jadranka; University Hospital Center Zagreb Department of Pediatrics, Division of Clinical Immunology, Allergology, Respiratory Diseases and Rheumatology, Zagreb, Croatia
15. Keles, Sevgi; Department of Pediatric Immunology, Necmettin Erbakan University, Konya, Turkey
16. Kostyuchenko, Larysa; Department of Pediatric Immunology and Reumatology, Western-Ukrainian Specialized Children’s Medical Centre, Lviv, Ukraine
17. Kovzel, Elena; Program of Clinical Immunology, Allergology and Pulmonology, University Medical Center, Nazarbaev University, Nur- Sultan, Kazakhstan
18. Kuli-Lito, Georgina; Department of Pediatrics, University Hospital Centre Mother Theresa, Tirana, Albania
19. Kurjane, Natalja; Children’s Clinical University Hospital, Riga, Latvia
20. Lázár, István; Department of Meteorology, University of Debrecen, Debrecen, Hungary
21. Litzman, Jiri; Department of Clinical Immunology and Allergology, St. Anne’s University in Brno, Faculty of Medicine, Masaryk University, Brno, Czech Republic
22. Mammadova, Vafa; Research-Immunology Laboratory, Azerbaijan Medical University, Baku, Azerbaijan
23. Miltner, Noémi; Department of Biochemistry and Molecular Biology, Faculty of Medicine, University of Debrecen, Debrecen, Hungary
24. Mironska, Kristina; University Clinic for Children’s Diseases, Department of Immunology, Faculty of Medicine, University “St.Cyril and Methodius” Skopje, North Macedonia
25. Murdjeva, Marianna (Plovdiv, Bulgaria); Department of Microbiology and Immunology, Faculty of Pharmacy, Research Institute, Medical University-Plovdiv, Plovdiv, Bulgaria
26. Nabieva, Umida; Academy of Sciences of the Republic of Uzbekistan, Institute of Immunology and Human Genomics, Tashkent, Uzbekistan
27. Nasrullayeva, Gulnara; 1-st Pediatric Department, Azerbaijan Medical University, Baku, Azerbaijan
28. Naumova, Elissaveta; Department of Clinical Immunology, Alexandrovska Hospital, Faculty of Medicine,MU,Sofia,Bulgaria
29. Orozbekova, Bubusaira; Kyrgyz-Russian Slavic University, Department of Epidemiology and Immunology, Bishkek, Kyrgyzstan
30. Pac, Malgorzata; Department of Immunology, The Children’s Memorial Health Institute, Warsaw, Poland
31. Pagava, Karaman; Department of Child and Adolescent Medicine, Tbilisi State Medical University, Tbilisi, Georgia
32. Petrosyan, Mery; Pediatric Cancer and Blood Disorders Center, Yerevan, Armenia
33. Petrovic, Gordana; Department of Clinical Immunology Institute for Mother and Child Health Belgrade, Serbia
34. Pocek, Lidija; Department of Allergology, Institute for Children Diseases, Clinical Center of Montenegro, Podgorica, Montenegro
35. Reisli, Ismail; Department of Pediatric Immunology, Necmettin Erbakan University, Konya, Turkey
36. Ress, Krista; Center of Allergology and Immunology, East-Tallinn Central Hospital, Tallinn, Estonia
37. Rezaei, Nima; Research Center for Immunodeficiencies, Children’s Medical Center, Tehran University of Medical Sciences, Tehran, Iran
38. Sciuca, Svetlana; Nicolae Testemitanu State University of Medicine and Pharmacy, Chisinau, Moldova
39. Sediva, Anna; Department of Immunology, Motol University Hospital, 2nd Faculty of Medicine, Charles University, Prague, Czech Republic
40. Serban, Margit; Academy of Medical Sciences-Research Unit, Clinical Emergency Paediatric Hospital Louis Turcanu, Timisoara, Romania
41. Sharapova, Svetlana; Immunology Department, Belarussian Research Center for Pediatric Oncology, Hematology and Immunology, Minsk, Belarus
42. Snimshchikova, Irina; Medical Institute, Orel State University named after I.S.Turgenev, Orel, Russia
43. Spahiu-Konjusha, Shqipe; Pediatric Clinic, Genetics Department, University Clinical Center of Kosovo Faculty of Medicine, University of Pristina “Hasan Prishtina”, Pristina Kosovo
44. Toplak, Natasa; Children’s Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia
45. Tuzankina, Irina; Institute of Immunology and Physiology of the Ural Branch of the Russian Academy of Sciences, Yekaterinburg, Russia
46. Volokha, Alla; Pediatric Infectious Disease and Pediatric Immunology Department, Shupyk National Healthcare University of Ukraine, Kiev, Ukraine
Author Contribution
LM designed this study and wrote the paper. All co-authors read the paper and approved its content.
Data Availability
Data used in this study are available on request.
Declarations
Ethics Approval
Not applicable.
Consent to Participate
All authors approved to participate in this study.
Consent for Publication
All authors approved publication of the manuscript.
Conflict of Interest
The authors declare no competing interests.
Footnotes
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Contributor Information
László Maródi, Email: edamarodi@gmail.com.
and The J Project Study Group:
Hassan Abolhassani, Tadej Avcin, Nerin Bahceciler, Mihaela Bataneant, Mikhail Belevtsev, Ewa Bernatowska, Mikhail Bolkov, Anastasia Bondarenko, Oksana Boyarchuk, Melinda Erdős, Nermeen Galal, Sevan Iritsyan, Vlora Ismaili-Jaha, Jadranka Kelecic, Sevgi Keles, Larysa Kostyuchenko, Elena Kovzel, Georgina Kuli-Lito, Natalja Kurjane, István Lázár, Jiri Litzman, Vafa Mammadova, Noémi Miltner, Kristina Mironska, Marianna Murdjeva, Umida Nabieva, Gulnara Nasrullayeva, Elissaveta Naumova, Bubusaira Orozbekova, Malgorzata Pac, Karaman Pagava, Mery Petrosyan, Gordana Petrovic, Lidija Pocek, Ismail Reisli, Krista Ress, Nima Rezaei, Svetlana Sciuca, Anna Sediva, Margit Serban, Svetlana Sharapova, Irina Snimshchikova, Shqipe Spahiu-Konjusha, Natasa Toplak, Irina Tuzankina, and Alla Volokha
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data used in this study are available on request.