Table 2.
Registries among RITA network
| Name | Web site | Since | Diseases | Countries | HCPs (number) | Enrolled patients (number) |
|---|---|---|---|---|---|---|
| AID-Registry | https://prst.gpoh.de/aid/ | NR | AID | Germany | 42 | 1376 |
| ATTRA Clinical Registry | http://attra.registry.cz/ | 2002 | AI | Czech Republic | 42 | NR |
| Czech National Guillain-Barrè Syndrome Registry | NR | NR | AI | Czech Republic | NR | NR |
| Banque nationale de données Maladies Rares (BNDMR) | http://www.bndmr.fr/ | 2013 | AI, AID | France | 950 | NR |
| Blau cohort study | NR | NR | AID | NR | NR | NR |
| Brainworks: Childhood CNS Vasculitis and Inflammatory Brain Diseases | http://www.sickkids.ca/research/brainworks/ | NR | AI, AID | NR | NR | NR |
| Centre des maladies rares (CEMARA) | www.cemara.org | NR | AI, AID | France | NR | NR |
| Centre de Référence Déficits Immunitaires Héréditaires (CEREDIH) | https://www.ceredih.fr/ | NR | AID, PID | France | 111 | NR |
| Centre de Référence National Cytopénies auto-immunes de l’enfant (CEREVANCE) | http://www.cerevance.org/ | NR | AI | France | NR | NR |
| CID and PIDs registry | https://old.iss.it/site/cnmr/registrare/cid/entry.aspx | NR | PID | Italy | NR | NR |
| Czech Registry of ANCA-associated vasculitis | Not available for public | NR | AI | Czech Republic | NR | 1000 |
| Dutch PID registry | None | NR | PID | Netherland | NR | NR |
| European Society for Blood and Marrow Transplantation (EBMT) registry | http://www.ebmt.org/ebmt-patient-registry | 1974 | PID, AI, AID | NR | NR | NR |
| European Society for Immunodeficiencies (ESID) registry | https://esid.org | 2004 | PID, AI, AID | NR | 126 | > 28,000 |
| EULAR WEB Library | https://www.eular.org/eular_imaging_library_portal.cfm | NR | AI | NR | NR | NR |
| Eurofever | https://www.printo.it/eurofever | NR | AID | Argentina, Armenia, Australia, Austria, Belgium, Brazil, Canada, Chile, China, Croatia, Czech Republic, Denmark, France, Georgia, Germany, Greece, Hungary, India, Israel, Italy, Japan, Latvia, Lebanon, Lithuania, Netherlands, Oman, Poland, Romania, Russian Federation, Saudi Arabia, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, United Kingdom, United States | NR | 4057 |
| French Vasculitis Study Group (FVSG) registry | https://www.vascularites.org/ | NR | AI | France | NR | 4000 |
| Hemophagocytic lymphoistiocytosis (HLH) registry | https://histiocytesociety.org/main-website-pages/clinical-studies/hlh-registry | NR | PID | NR | NR | NR |
| IMMUNAID | Not yet launched | NR | AID | France, Germany, Italy, Netherlands, Spain, Turkey | NR | NR |
| Inception Cohort for juvenile Systemic sclerosis | http://www.juvenile-scleroderma.com/ | 2014 | AI | Austria, Belgium, Czech Republic, Denmark, Germany, Italy, Latvia, Portugal, Russia, Slovenia, Spain, Sweden, Turkey, United Kingdom, United States of America, Argentine, Brazil, Israel, India | 30 | 97 |
| Infevers | https://infevers.umai-montpellier.fr/web/ | 2001 | AID | NR | NR | 1628 |
| Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection | https://ctc.tirol-kliniken.at/page.cfm?vpath=oeffentliche&action=viewdetail&studie=7852 | 2009 | AID | Austria | NR | NR |
| IPINET | www.aieop.org/web/operatori-sanitari/gruppi-di-lavoro/immunodeficienze/ | 1999 | PID | Italy | 62 | 3064 |
| Irish Rare Kidney Disease registry and biobank | http://www.tcd.ie/medicine/thkc/research/rare.php/ | 2012 | AI | Ireland | 9 | 668 |
| JIR cohort | http://www.fondationres.org/fr/jircohorte | NR | AI, AID | France, Switzerland, Belgium, Luxembourg, Morocco, Germany | 69 | 4805 |
| JULES: Registro nacional Lupus eritematoso sistémico | NR | NR | AI | Spain | 45 | 4024 |
| Kawanet | Not active | 2011 | AID | France | 65 | 466 |
| Kaw-race | http://www.imas12.es/redcap/ | NR | AI | Spain | NR | NR |
| Kidbiosep Cohort | None | NR | AI | France | NR | 324 |
| MALATTIE RARE LAZIO V 1.3 | https://www.regione.lazio.it/asponline/servizi/malattie_rare/login.php | NR | PID | Italy | NR | 192 |
| Myasthenia Gravis Registry (MYREG) | http://myreg.registry.cz | AI | Czech Republic | 9 | 776 | |
| National Biobank | None | NR | AID | Italy | NR | 2727 |
| Orbis Maladies Rares | None | NR | AI | France | NR | NR |
| Paediatric MS database (OPTIMISE) | None | NR | AID | United Kingdom | NR | 100 |
| PCID registry | www.pcid-study.org | 2011 | PID | International | NR | NR |
| Paediatric Behçet’s Disease (PEDBD) registry | Not active | NR | AID | France, Italy, Morocco, Iran, Turkey, Germany | NR | 233 |
| PEDOLUP | http://www.fondationres.org/fr/jircohorte | NR | AI | France, Switzerland, Belgium, Luxembourg, Morocco, Germany | NR | 90 |
| Pharmachild | www.printo.it | NR | AI | NR | NR | 10,100 |
| PIDcare | pidcare.se | NR | PID | Sweden | 25 | 2500 |
| PID-NET | www.pid-net.org | 2009 | PID, AI, AID | Germany | NR | 2600 |
| Rare Disease Cohort (RADICO)-AcoStill | http://www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/140-cohorte-radico-acostill | 2014 | AID | France | 8 | NR |
| Registro AIJ sistémica y enfermedad de Still del adulto | Not active | NR | AID | Spain | NR | NR |
| Registro Nazionale Malattie Rare (RNMR) | https://old.iss.it/site/cnmr/mrregi/mrlogin.asp | 2001 | PID, AI, AID | Italy | NR | NR |
| Registro Nacional Dermatomiositis Juvenil | None | NR | AI | Spain | NR | NR |
| Registro Lombardia Malattie Rare (ReLMaR) | http://malattierare.marionegri.it/content/view/91/99/ | 2015 | PID, AI, AID | Italy | 54 | NR |
| Registro de Uvéitis Asociada a Artritis idiopatica juvenil | http://uveitis.pacifico-meetings.com/index.php | 2013 | AI | Spain | 16 | NR |
| Rational Use of Biologics in rare Refractory Immune mediated inflammatory diseases Consortium (RUBRIC) | https://www.rubricregister.nl/ | NR | AI | Netherlands | NR | NR |
| Sarcoidosis UK | https://www.sarcoidosisuk.org/ | NR | AI | United Kingdom | NR | NR |
| Stem Cell Transplant for primary Immune Deficiencies in Europe (SCETIDE) | www.scetide.org | NR | PID | NR | NR | NR |
| UK JSLE Cohort Study and Repository | https://www.liverpool.ac.uk/translational-medicine/research/ukjsle/about/ | 2006 | AI | United Kingdom | 23 | 500 |
| UK and Ireland Vasculitis Rare Disease Group (UKIVAS) Registry | https://research.ndorms.ox.ac.uk/ukivas/ | NR | AI | United Kingdom, Ireland | 27 | 5000 |
| UKPIN Registry | http://www.ukpin.org.uk/registry/ukpin-registry-login | NR | PID | United Kingdom | NR | 4600 |
NR = not reported