{"id":5379,"date":"2023-02-10T15:07:59","date_gmt":"2023-02-10T14:07:59","guid":{"rendered":"https:\/\/www.alpha1-deutschland.org\/?page_id=5379"},"modified":"2025-04-22T13:38:21","modified_gmt":"2025-04-22T11:38:21","slug":"wofuer-gibt-es-alpha-1-register","status":"publish","type":"page","link":"https:\/\/alpha1-deutschland.org\/en\/wofuer-gibt-es-alpha-1-register","title":{"rendered":"What are Alpha-1 registers used for?"},"content":{"rendered":"
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What are Alpha-1 registers used for?<\/span><\/h1>\n

The registries collect data from patients with alpha-1 antitrypsin deficiency over the longest possible period. This data is used to answer questions from physicians, scientists, and epidemiologists. Many questions about the disease and its progression remain unanswered. The data in the registry should reflect the realities of care and its quality as closely as possible to real-world practice.<\/p>\n

Study data can also be compared with registry data, and data analysis can provide starting points for new studies. Furthermore, participants (voluntarily enrolled patient groups) can be recruited for studies on new therapies.<\/p>\n

Which alpha-1 registers are relevant for us?<\/span><\/h2>\n

Currently, two registries are available: the German Alpha-1 Registry and the international EARCO Registry. Another one, specifically for children and adolescents with alpha-1 antitrypsin deficiency<\/a>, is currently being set up by Prof. Ganschow at the University Hospital Bonn.<\/p>\n

Patients can enter their data into the German registry themselves, with support from their doctors. Entries into the EARCO registry are only made by doctors\/specialists. Unfortunately, this is currently only possible in large centers. You can find out which centers are participating in the data collection on the EARCO website.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t

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German Register for People Affected by AATM<\/span><\/h3>\n

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Contact person:
\nProf. Dr. med. Dr. rer. nat. Robert Bals
\nSaarland University Hospital,
\nDepartment of Internal Medicine V, Pulmonology, Allergology, Respiratory and Environmental Medicine, Building 41
\nKirrberger Stra\u00dfe, 66421 Homburg\/Saar
\nEmail robert.bals@uks.eu<\/p>\n<\/div>\n\n\n\n

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European Alpha-1 Research Collaboration (EARCO) <\/span><\/h3>\n

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The European Alpha-1 Research Collaboration (EARCO<\/strong>) is an organization supported by the European Respiratory Society, whose focus is on research and teaching on Alpha-1 Antitrypsin Deficiency \u2013 both early detection and access to healthcare.<\/p>\n

The core of the initiative is the registry. The collected data from Alpha-1 patients will help improve understanding of the disease and facilitate future research.<\/p>\n

EARCO Register: Further information at: www.earco.org<\/a> and www.earco.org\/earco-registry<\/a><\/p>\n<\/div>\n\n\n\n

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EARCO Information Flyer <\/span><\/h3>\n<\/div>\n\n\n\n
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EARCO Initiative<\/a><\/h3>\n
<\/i> 1 file(s) <\/i> 1.33 MB<\/div>\n <\/div>\n
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Alpha-1-KIDS Registry<\/span><\/h3>\n
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The Alpha-1-KIDS app, the registry for children and adolescents with Alpha-1 antitrypsin deficiency, serves, analogous to the registries for adults, primarily to derive helpful information about the disease.<\/p>\n

Families themselves submit their registrations. Participation is possible via smartphone using the app (recommended) or via PC using this website.<\/p>\n<\/div>\n

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Further information can be found at: https:\/\/alpha1bonn.de\/<\/a><\/p>\n<\/div>\n<\/div>\n\n\n\n

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Alpha1 Register<\/a><\/div><\/div>
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Children's and youth seminar at the Alpha1 information day 2026<\/span><\/a>

Children's and youth seminar at the Alpha1 information day 2026<\/span><\/h3><\/div><\/div><\/div><\/div>
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Why do we need a European patient registry \u2013 and what benefits will it bring us?<\/span><\/a>

Why do we need a European patient registry \u2013 and what benefits will it bring us?<\/span><\/h3><\/div><\/div><\/div><\/div>
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Successful launch of the Alpha-1-KIDS registry<\/span><\/a>

Successful launch of the Alpha-1-KIDS registry<\/span><\/h3><\/div><\/div><\/div><\/div>
\"Coverbild<\/div><\/div><\/div>
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Register EARCO<\/span><\/a>

Register EARCO<\/span><\/h3><\/div><\/div><\/div><\/div>
\"elektronische<\/div><\/div><\/div>
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Registers in Germany<\/span><\/a>

Registers in Germany<\/span><\/h3><\/div><\/div><\/div><\/div><\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"AutorIn Marion Wilkens, 1. Vorsitzende Alpha1 Deutschland e.V. Die Klinik f\u00fcr Innere Medizin V des Universit\u00e4tsklinikums des Saarlandes (UKS) unter der Leitung von Prof. Dr. med. Dr. rer. nat. Robert...","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-5379","page","type-page","status-publish"],"yoast_head":"\nWof\u00fcr gibt es Alpha-1 Register?<\/title>\n<meta name=\"description\" content=\"Alpha-1 Register sammeln Daten von Alpha-1-Patienten \u00fcber l\u00e4ngere Zeitr\u00e4ume. 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