Safety of vaccinations in patients with cryopyrin-associated periodic syndromes: a prospective registry based study. Rowczenio DM, Gomes SM, Arostegui JI, Mensa-Vilaro A, Omoyinmi E, Trojer H, et al. Beukelman T, Patkar NM, Saag KG, Tolleson-Rinehart S, Cron RQ, DeWitt EM, et al. Further studies should focus on the identification of early predictors of long-term outcome to improve the process and outcome of transition. Pediatrics. Lebensjahr, Dr. med. Piram M, Kone-Paut I, Lachmann HJ, Frenkel J, Ozen S, Kuemmerle-Deschner J, et al. 07071 29-83781. Front Psychol. a HR-QoL compared to the average German population. LSB, JK and SH conducted the data analysis and interpretation, and reviewed, and revised the manuscript. 2013;72(5):678–85. Consolaro A, Negro G, Lanni S, Solari N, Martini A, Ravelli A. Das Zentrum für pädiatrische Rheumatologie ist Teil des Tübinger pädiatrischen Inflammationszentrums. The phenotype of TNF receptor-associated autoinflammatory syndrome (TRAPS) at presentation: a series of 158 cases from the Eurofever/EUROTRAPS international registry. 2017;76(5):821–30. The portal for rare diseases and orphan drugs https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN [01.10.2019]. In accordance with Stringer et al., patient satisfaction scores > 7 were defined as “high”, ≤7 and ≥ 5 as “moderate” and < 5 as “low satisfaction” [18]. These included 9 overarching principles and 27 disease-specific statements (7 for CAPS, 11 TRAPS, 9 MKD/HIDS). Gesellschaft für Kinder- und Jugendrheumatologie (GKJR) 2009;72(Suppl 1):20–5. Autoinflammatorische syndrome und amyloid-A-Amyloidose. Sandra Hansmann. Their implementation will decrease variation in care and optimize health outcomes for children with AID. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. Only two participants reported problems with referral that led to the discontinuation of rheumatological care (Fig. The engagement and support of the German paediatric rheumatology community was critical to develop the statements, algorithms and CTPs. Über die Praxis App erhalten Sie auch Informationen zur Praxis und die Information über anstehende Vorsorgeuntersuchungen und Impfungen. J.B. received speaker’s bureaus or consulting fees from AbbVie, Novartis, and Pfizer. Methods: Inclusion criteria were: diagnosis of chronic inflammatory rheumatic joint disease or systemic rheumatic disease, duration of care for >2 years in the pediatric rheumatology center and ≥2. Pediatric rheumatic diseases comprise a broad spectrum of diseases with various clinical appearances and etiologies, including juvenile idiopathic arthritis (JIA) and its subgroups, autoinflammatory diseases, systemic connective tissue diseases (SCTD) and vasculitis. As assumed in advance, responsiveness decreased with time passed since patients were transferred resulting in significantly lower age in participants compared to the non-responsive cohort. The proposed German PRO-KIND consensus statements and resulting CTPs represent an important step forward beyond disease classification-based recommendations for patients with AIDs [19]. Heijstek MW, Ott de Bruin LM, Bijl M, Borrow R, van der Klis F, Kone-Paut I, et al. 2010;222(6):356–61. Jaeger VK, Hoffman HM, van der Poll T, Tilson H, Seibert J, Speziale A, et al. CAS Google Scholar. The majority were treated in rheumatology practices (36/65; 55.4%), while the remaining participants (29/65; 44.6%) had been referred to the internal rheumatology department of the University Hospital Tuebingen. Pediatric Rheumatol. SH and LSB conceptualized and designed the study, performed the measurements, designed the data collection instruments, collected data, carried out the initial analyses, drafted the initial manuscript, and reviewed and revised the manuscript. Disease activity and damage should be determined using validated tools. Transition as a structured individual process of preparation and patient empowerment can reduce risks of adverse long-term outcomes. 2015;174(6):707–14. E.L. received speaker honoraria from Novartis and SOBI and funding for the AID-registry by the Federal Ministry of Education and Research (BMBF: 01GM08104, 01GM1112D, 01GM1512D). Huber AM, Giannini EH, Bowyer SL, Kim S, Lang B, Lindsley CB, et al. Sustained remission of symptoms and improved health-related quality of life in patients with cryopyrin-associated periodic syndrome treated with canakinumab: results of a double-blind placebo-controlled randomized withdrawal study. Thirteen of them had their therapy escalated and three de-escalated. 2017;60(1):3–16. 1 this recommendation was noticeably modified in comparison with the SHARE recommendations. Still, one out of four respondents (22/85; 25.9%) indicated that their disease had negative effects on relationships towards friends and family. Deutsch (Muttersprache), Französisch (Muttersprache), Luxemburgisch (Muttersprache), Englisch (fliessend), Kinderarztpraxis Neustadt - Kinderarzt in Luzern. Pediatr Rheumatol Online J. The study cohort was more physically active than the respective average age groups. Groot N, de Graeff N, Marks SD, Brogan P, Avcin T, Bader-Meunier B, et al. 1989-1997 Studium der Humanmedizin an den Universitäten Gießen, Bonn und Tübingen; 1998 Promotion im Fach Medizin mit summa cum laude (Stipendium der Kind-Philipp-Stiftung für Leukämieforschung); seit 1998 wissenschaftliche Angestellte am Universitätsklinikum Tübingen, Klinik für Kinder- und Jugendmedizin, Abteilung I; 2001-2003 DFG-geförderter Forschungsaufenthalt im Labor von Gerald . Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Real-life effectiveness of canakinumab in cryopyrin-associated periodic syndrome. However, in clinical practice this approach is utilized in Germany and had to be included as one of the treatment arms in order to allow for inclusion of all patients into CTP-guided care. Stringer E, Scott R, Mosher D, MacNeill I, Huber AM, Ramsey S, et al. The optimal day-to-day management of rare AIDs remains challenging. By using this website, you agree to our volume 18, Article number: 17 (2020) [10] have described a decline in overall patient satisfaction after the transfer to adult care, which was observed to a lesser extent in this cohort. Nat Rev Rheumatol. Autoinflammatorische Erkrankungen (AI) stellen eine Gruppe monogenetischer entzündlicher Erkrankungen dar, die durch frühkindlichen Beginn charakterisiert werden. The PRO-KIND CAPS/TRAPS/MKD/HIDS working group established the first evidence-based, actionable treat-to-target consensus treatment plans for three rare hereditary autoinflammatory diseases. Intensivstation Neonatologie (2012-2014) If not achievable, minimal disease activity should alternatively be considered. Rare autoinflammatory diseases (AIDs) including Cryopyrin-Associated Periodic Syndrome (CAPS), Tumor Necrosis Receptor-Associated Periodic Syndrome (TRAPS) and Mevalonate Kinase Deficiency Syndrome (MKD)/ Hyper-IgD Syndrome (HIDS) are genetically defined and characterized by recurrent fever episodes and inflammatory organ manifestations. Ravelli A, Martini A. Limitations also resulted from the study design of a cross-sectional patient survey, as the data obtained in such studies cannot prove causal attribution. 1 popular form of Abbreviation for Biologika In Der Kinderrheumatologie updated in 2023 All Acronyms Setup Similar studies have found lower as well as comparable rates of successful transfer (range: 48.0–74.0%) [10, 18, 35] while Walter et al. Treatment aims are early control of diseases activity, prevention of disease and treatment related damage and optimal health-related quality of life (HRQoL). McDonagh JE, Southwood TR, Shaw KL, BSPAR. In individual cases, response to treatment with TNF-α or IL-6 inhibitors has been reported [30, 43]. Still, the questions asked in this study have been used in different studies [10, 18] and in the ongoing evaluation of patients’ readiness for transfer in the TTP. Barth S, Haas JP, Schlichtiger J, Molz J, Bisdorff B, Michels H, et al. Google Scholar. Grimwood C, Despert V, Jeru I, Hentgen V. On-demand treatment with anakinra: a treatment option for selected TRAPS patients. Complete remission is the key treatment target and defined as absence of clinical symptoms (AIDAI score < 9 [26], PGA and PPGA of 0/10) cm and normal inflammatory markers [27]. 2019 American College of Rheumatology/Arthritis Foundation guideline for the treatment of juvenile idiopathic arthritis: therapeutic approaches for non-systemic polyarthritis, Sacroiliitis, and Enthesitis. Furthermore, we thank all patients and families who participated in this study and thereby helped to improve transitional care for future patients. A scoping review of the PubMed database was conducted to identify relevant parameters for the evaluation of health care transition programs. Treatment of patients with MKD/HIDS should follow a treat-to-target approach to find individual treatment strategy, medication and doses (Fig. Although the quality of life of former pediatric rheumatology patients remains impaired, this study found promising signs that could support the known positive effects of a good health care transition program on improving long-term outcomes. Key principles of these treat-to-target strategies included 1) anchoring individual strategies in disease activity, estimated risk and anticipated trajectories, 2) selecting validated monitoring instruments, 3) defining treatment targets and intervals and 4) providing evidence-based therapies and strategies for adjustment. Pediatr Rheumatol 18, 17 (2020). Pediatr Rheumatol Online J. et al. The impact of the COVID-19 pandemic on trajectories of well-being of middle-aged and older adults: a multidimensional and multidirectional perspective. Pediatr Rheumatol 20, 121 (2022). In addition, inflammatory markers and the physician and patient/parent global assessments (PGA, PPGA) should be determined serially. Demographic characteristics of the study cohort included age, gender, marital status, living situation and levels of education and employment. Supporting the health care transition from adolescence to adulthood in the medical home. Qual Life Res. The current state of the pathogenicity of a genetic variant can be determined using the infevers database [33]. Background: Reliable data on the course and treatment of pediatric COVID-19 ("corona virus disease 2019") in immunosuppressed patients with rheumatic diseases are missing. Kone-Paut I, Lachmann HJ, Kuemmerle-Deschner JB, Hachulla E, Leslie KS, Mouy R, et al. Neben der Allgemeinen Kinderheilkunde werden hier vor allem Kinder und Jugendliche mit Krebserkrankungen behandelt. G.H. a Treat-to-target PRO-KIND Consensus Treatment Plan (CTP) for patients with Cryopyrin-Associated Periodic Syndrome (CAPS)*1 Most patients with CAPS have a continuous disease course, on-demand therapy is only recommended in patients with low disease activity. Touitou I. Infevers - The registry of Hereditary Auto-inflammatory Disorders Mutations https://infevers.umai-montpellier.fr/web/ [01.10.2019]. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Outcome in adults with juvenile idiopathic arthritis: a quality of life study. AA amyloidosis complicating the hereditary periodic fever syndromes. Analysis of cryopyrin-associated periodic syndromes (CAPS) in German children: epidemiological, clinical and genetic characteristics. Rheumatology (Oxford). Lainka E, Neudorf U, Lohse P, Timmann C, Stojanov S, Huss K, et al. Bitte treffen Sie eine Auswahl um fortzufahren. The impact of AID on individual patients varies widely; close monitoring of disease activity in the individual patient is therefore needed. Continuity of care as an indicator of health care costs was assessed using self-reported information on the form and frequency of adult care, discontinuation and disruption of care, changes in diagnosis and treatment and hospital admissions. Protocols for the initial treatment of moderately severe juvenile dermatomyositis: results of a Children's arthritis and rheumatology research Alliance consensus conference. 2011;63(4):465–82. Suris J-C, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. Similarly, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) CTPs for juvenile dermatomyositis stratify approaches based on subtype and disease activity [51, 52]. Book Horror autoinflammaticus: the molecular pathophysiology of autoinflammatory disease (*). 3 in patients with CAPS and HIDS/MKD, severe inflammatory responses have been reported especially to pneumococcal but also meningococcal vaccines [47, 61, 62]. Protokolle zur Klassifikation, Überwachung und Therapie in der Kinderrheumatologie (PRO-KIND): Enthesitis-assoziierte Arthritis: Ergebnisse der Arbeitsgruppe Enthesitis-assoziierte Arthritis in. Mutations in the autoinflammatory cryopyrin-associated periodic syndrome gene: epidemiological study and lessons from eight years of genetic analysis in France. They are divided into participants who reported weekly physical activity of 2.5 hours or more (lower dark bar) and those who reported less weekly physical activity (upper light bar). Figure 2a, b gives an overview of the frequency of physical activity and participation in organized sports. In CAPS, the stratification into distinct phenotypes is widely accepted; however, also in patients with TRAPS and MKD/HIDS disease phenotypes can vary dramatically [30, 34]. During the visits, the adolescent patients independently take over the interaction with the physicians - at first with the pediatric rheumatologist and with increasing age with the adult rheumatologist. Article However, many of the European countries can potentially follow the proposed paths. b The figure shows the number of participants who are physically active in organised sports clubs (n = 84 due to one missing data). Lane T, Loeffler JM, Rowczenio DM, Gilbertson JA, Bybee A, Russell TL, et al. The linkage of AID specific clinical symptoms and raised inflammatory markers provides strong evidence of an AID. The aim of this study was to measure long-term transition outcomes such as health-related quality of life (HR-QoL), patient satisfaction, and continuity of care in former patients of the interdisciplinary Tuebingen Transition Program (TTP). Furthermore, the TTP tries to individualise the timing of transfer in close cooperation with patients, parents, the medical team, and psycho-social workers according to patients’ transfer readiness and disease activity. Almost a third each received basic antirheumatic therapy (28.2%) and biologicals including Janus kinase (JAK) inhibitors (32.9%). Kone-Paut I, Galeotti C. Current treatment recommendations and considerations for cryopyrin-associated periodic syndrome. Ihre Haus- & Fachärzte von der Geburt bis zum vollendeten 18. Tilmann Kallinich Einzigartiges, bewährtes Referenzwerk für Spezialisten der Kinderrheumatologie Umfassende Darstellung aller relevanten Krankheitsbilder Detaillierte Therapieanweisungen mit Dosierung Part of the book series: Springer Reference Medizin (SRM) 60k Accesses Sections Table of contents About this book Keywords Editors and Affiliations Evidence-based statements were crafted anchored in the 2015 SHARE recommendations and vetted in iteratively online surveys and telephone conferences. Masters SL, Simon A, Aksentijevich I, Kastner DL. The presence of a pathogenic variant supports the clinical diagnosis. 2). In addition typical clinical symptoms for CAPS include urticaria-like rash, cold/stress triggered episodes, sensorineural hearing loss, chronic aseptic meningitis and skeletal abnormalities such as epiphyseal overgrowth and frontal bossing [11]. Concerning their experience in adult care, 86.1% (56/65) declared that they had enough time to ask all their individual questions and 84.6% (55/65) stated that they received sufficient and intelligible answers. Early detection of sensorineural hearing loss in Muckle-Wells-syndrome. Higher scores on the EQ VAS and lower EQ-5D-5L index scores indicate better health-related quality of life, lower PGA scores indicate less disease activity. Furthermore, physical activity was assessed as another indicator for population health in the study cohort and compared to data from the German Health Interview and Examination Survey for Adults DEGS1 [17]. Google Scholar. Ann Rheum Dis. 2) The proposed on-demand strategy for mild phenotypes is supported by low level evidence. The aims of the PRO-KIND initiative for CAPS/TRAPS/MKD/HIDS were 1) to establish consensus-based statements for the diagnosis and management and 2) to establish national treat-to-target consensus treatment plans (CTPs) for CAPS, TRAPS and MKD/HIDS suitable for implementation. In 2015, the Single Hub and Access point for pediatric Rheumatology in Europe (SHARE) initiative set out to improve the management of patients with rheumatic diseases including AIDs [19]. 2017;15(1):1. Medical therapies were grouped according to common practice. Zum breiten Spektrum der Kinderrheumatologie gehören die folgenden grossen Gruppen: Juvenile idiopathische Arthritis (= chronische Gelenksentzündung). 2015;54(9):1749–51. Limenis E, Grosbein HA, Feldman BM. Other team members such as physiotherapists and teachers are also involved. Kinderrheumatologie (2014-2017) Entwicklungsneurologie (2016) Pädiatrische Sonographie (2014-2018) In general, the mean scores ranged from 5.38 to 9.03 (mean: 7.63). 2012;30(4 Suppl 73):S157–62. Ihre Haus- & Fachärzte von der Geburt bis zum vollendeten 18. Overall satisfaction as well as satisfaction with relevant components of pediatric, transitional, and adult care was generally high. Impact of the COVID-19 pandemic on depression, anxiety, loneliness, and satisfaction in the German general population: a longitudinal analysis. 3b). Giardino S, Lanino E, Morreale G, Madeo A, Di Rocco M, Gattorno M, et al. Comparison of population health status in six European countries: results of a representative survey using the EQ-5D questionnaire. Goldbach-Mansky R, Kastner DL. ^ marks age group in which the study cohort is only represented by 3 persons. Hinweise zum Klinikaufenthalt und Beratungsstellen. Regular readiness monitoring is carried out, and transfer is made in a remission phase if possible. Ann Rheum Dis. 2015;13(1):43. © 2023 BioMed Central Ltd unless otherwise stated. A priori, a unified formal PRO-KIND framework and multi-step process for the development of consensus-based protocols was established. Article 1 Garmisch-Partenkirchen, Oktober 2006 Gastschriftleiter › Author Affiliations. Department of Pediatrics, Division of Pediatric Rheumatology and autoinflammation reference center Tuebingen (arcT), University Hospital Tuebingen, Tuebingen, Germany, Luca Samuel Boeker, Jasmin Beate Kuemmerle-Deschner, Gabriele Erbis & Sandra Hansmann, Centre for Interdisciplinary Clinical Immunology, Rheumatology and Autoinflammatory Diseases and Department of Internal Medicine II (Oncology, Hematology, Immunology, Rheumatology, Pulmology), University Hospital Tuebingen, Tuebingen, Germany, Programme area Epidemiology and Health Care Research, German Rheumatism Research Center Berlin and Leibniz Institute, Berlin, Germany, You can also search for this author in Front Immunol. Publication of this manuscript was supported by the Open Access Publishing Fund of the University of Tuebingen. http://www.cebm.net/oxford-centre-evidence-based-medicine-levels-evidence-march-2009/: Center for evidence-based medicine; March 2009 [01.10.2019]. Ethics approval for the study was given by the Ethics committee of the Medical Faculty of the University of Tuebingen (Project number: 411/2020BO). Stratified treatment approaches are increasingly made available for childhood rheumatic diseases. 2016;170(3):205–11. Mean patient satisfaction with pediatric care (8.4; standard deviation (SD) 1.7) and with the transition program (7.9; SD 2.6) was higher than with adult care (7.7; SD 2.2). Werdegang. Due to the individual time period of termination of treatment in the TTP and the completion of the survey between 1 month and 16 years after transfer, it cannot be excluded that the individual perception of the TTP has changed over time. Kinderarztpraxis Tübingen - Dr. med. Article The integration of patient perspective through AIDAI, physician rating of disease activity and assessment of inflammatory markers was utilized in the initial approval studies for IL-1 inhibition in AIDs [26, 27, 46]. 2017;31(4):596–609. Informationsportal zur Kinder- und Jugend-Reha (dort finden Sie auch Formulare zur Beantragung einer Rehabilitationsmaßnahme): www.kinder-und-jugendreha-im-netz.de. * The PRO-KIND statements were adapted from the SHARE recommendations for the management of autoinflammatory diseases [19]. Terms and Conditions, The study cohort showed a lower mean score of the EQ VAS compared to the average German population. The CTPs were established to define standards for the heterogeneous group of autoinflammatory diseases including clinical phenotyping, relevant laboratory tests and genetic testing. Twenty-three participants (23/65; 35.4%) indicated that their prescribed medication was discontinued after transfer to adult care. Projekte zur Klassifikation, Überwachung und Therapie in der Kinderrheumatologie (Projects for the classification, monitoring and therapy in paediatric rheumatology) SAA: Serum-Amyloid A. . N Engl J Med. Cuisset L, Jeru I, Dumont B, Fabre A, Cochet E, Le Bozec J, et al. 2003;48(3):767–75. Foster HE, Marshall N, Myers A, Dunkley P, Griffiths ID. Entwicklungsneurologie (2016) Living with autoinflammatory diseases: identifying unmet needs of children, adolescents and adults. In severe cases and poor quality of life, allogeneic haematopoietic stem cell transplantation (HSCT) may be considered [48]. sabine.edele-fiedler@med.uni-tuebingen.de. Correspondence to Incidence of TNFRSF1A mutations in German children: epidemiological, clinical and genetic characteristics. Diagnostic criteria for cryopyrin-associated periodic syndrome (CAPS). PubMed Central N.R. Cite this article. Child Care Health Dev. The PRO-KIND CAPS/TRAPS /HIDS/MKD working group of the German Society of Pediatric Rheumatology (GKJR) started in October 2015. Kullenberg T, Lofqvist M, Leinonen M, Goldbach-Mansky R, Olivecrona H. Long-term safety profile of anakinra in patients with severe cryopyrin-associated periodic syndromes. 2009;124(6):1141–9 quiz 50-1. PRO-KIND disease-specific consensus statements for diagnosis and management of CAPS/TRAPS/HIDS/MKD *. N Engl J Med. www.kinderaerzte-im-netz.de | Impressum | Datenschutz | Disclaimer | Kontakt |, Weitere Gesundheitsthemen: Frauengesundheit |
G.E. To some extent, this is comparable to the results of Hazel et al. Phenotypic and genotypic characteristics of cryopyrin-associated periodic syndrome: a series of 136 patients from the Eurofever registry. Cookies policy. Protocols on classification, monitoring and therapy in children's rheumatology (PRO-KIND): results of the working group Polyarticular juvenile idiopathic arthritis. 2018;77(3):336–42. Patients who didn’t respond were also more likely to be treated with steroids (Supplement 1). 2015;74(11):2043–9. Google Scholar. Research Topic Children's Rheumatism. Department of Pediatric Rheumatology, autoinflammation reference centre Tuebingen (arcT), University Children's Hospital Tuebingen, Tuebingen, Germany. Article The national PRO-KIND initiative addresses the urgent need to improve quality of care and outcome of children and adolescents living with rheumatic conditions by standardization and effective implementation of evidence-based therapies and thereby decreasing variation in care [20,21,22]. Terms and Conditions, Objective: The aim of our study was to describe the distinct features of inflammatory bowel disease (IBD) in juvenile idiopathic arthritis (JIA) patients and to identify risk factors for its development. Papa R, Doglio M, Lachmann HJ, Ozen S, Frenkel J, Simon A, et al. If you need further information or want to take part in our network: contact us. Pediatr Rheumatol Online J. Patient satisfaction is an important indicator for effective high-quality transition [30] and the most commonly studied issue, although validated instruments in all languages remain lacking [31, 32]. Modified recommendations were drafted and iteratively discussed, adjusted and vetted in regular telephone conferences. J.B.K.-D. performed clinical studies with and received educational, research and centre grants and honoraria from Novartis, AbbVie and SOBI. Google Scholar. At the end of each visit, parents are attending and included in the discussion about further treatment. STIKO: German Permanent Vaccination Commission. 07071 29 81386, Faxnummer: Several AID real-life series have focussed on the frequency of achieving remission and the requirement for dose adjustments. Ann Rheum Dis. The final documents were submitted to the GKJR Board for approval. Klin Padiatr. The longer version of this instrument unfortunately did not seem fitting for this study since it surveyed topics that do not apply to the process and cohort of the TTP, e.g., working environment. a We ranked basic therapy as level 1, biologicals and JAK-inhibitors as level 2, and steroids as level 3. Horneff G, Klein A, Ganser G, Sailer-Hock M, Gunther A, Foeldvari I, et al. Genetic counselling for patients and their families is often required [32]. JKD supervised the project as the head of the Pediatric Inflammation Center, Tuebingen, and critically reviewed the manuscript. König H-H, Bernert S, Angermeyer MC, Matschinger H, Martinez M, Vilagut G, et al. PubMed 2017;76(12):1965–73. Autoinflammatory diseases and SCTD were more frequent in non-respondents. Specific patient groups such as those with a severe phenotype will likely require higher doses to achieve remission [17]. In TRAPS, treatment decisions should be guided by the initial and subsequent phenotypes, disease activity and risk estimation, standardized monitoring and treatment adjustments are critical to achieve remission (Fig. This relates to the large difference in follow-up rates between patients with and without disease activity at the time of their last visit in the TTP. The approved statements were integrated into three disease specific consensus treatment plans (CTPs). biol. This limits the power and validity of such studies. b Treat-to-target PRO-KIND Consensus Treatment Plan (CTP) for patients with TNF Receptor-Associated Periodic Syndrome (TRAPS). An international group of interdisciplinary health professionals, patients and their families has developed consensus-based proposals for outcome indicators of a successful transition to adult health care. Consensus protocols for the diagnosis and management of the hereditary autoinflammatory syndromes CAPS, TRAPS and MKD/HIDS: a German PRO-KIND initiative. 07071 29-4713, E-Mail-Adresse: While four of them cited lack of disease activity as the reason and for two other participants it was only a temporary interruption, two participants stated that they had not found a new rheumatologist after moving to another town. Obwohl erst seit 2003 in Deutschland offiziell als Zusatzbezeichnung anerkannt, stehen heutzutage über 200 Kinder- und Jugendrheumatologen (d. h. 1,4 Kinderrheumatologen pro 100 000 Kinder) für die.