Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| GPOH Consortium Sickle Cell Disease | OTHER |
| Johann Wolfgang Goethe University Hospital | OTHER |
| Universitätsklinikum Hamburg-Eppendorf | OTHER |
| University Hospital Ulm |
Not provided
Not provided
Not provided
Not provided
Sickle cell disease is one of the most common hereditary diseases. Most severe complications can be avoided if the disease is detected early and treated appropriately.
The sickle cell disease registry of the Society for Paediatric Oncology/Haematology aims at describing the epidemiology of sickle cell disease in German-speaking central Europe. Patients with sickle cell disease will be characterized clinically and genetically and treatment will be documented with the aim to find predictors of the course of disease.
In addition, the registry results should provide a solid evidence base to incorporate sickle cell disease into routine newborn screening and to update the national guidelines for the management of patients suffering from sickle cell disease in Germany.
A consortium of five university hospitals (Berlin, Frankfurt, Hamburg, Heidelberg, Ulm) has been mandated by the Society for Paediatric Oncology/Haematology to implement this registry.
The number of participating centers is constantly increasing and new centers that take care of either pediatric or adult patients with sickle cell disease are encouraged to support the registry.
For further information please refer to: http://www.sichelzellkrankheit.info/
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with Sickle Cell Disease | Patients with any sickling condition, including among others Sickle Cell Anemia, HbSC Disease, HbS-betaThal, excluding Sickle Cell Trait. |
Not provided
| Measure | Description | Time Frame |
|---|---|---|
| Change in incidence of sickle-cell disease | The incidence of sickle-cell disease will be reported every year in comparison to the preceding Report. | Baseline and yearly, up to 10 years |
| Measure | Description | Time Frame |
|---|---|---|
| Complications of sickle-cell disease | In addition to the incidence of the disease itself also possible complications will be reported in comparison to the preceding report (in case of the first report, only the prevalence will be reported as baseline). | Baseline and yearly, up to 10 years |
| Treatment of sickle-cell disease |
Not provided
Inclusion Criteria:
signed informed consent
current residency in either Germany, Austria or Switzerland
sickle cell disease confirmed by hemoglobin analysis or molecular genetic analysis
Exclusion Criteria:
- isolated heterozygous trait for HbS
Not provided
Not provided
All patients with sickle cell disease being treated at participating centers that signed the informed consent form.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Joachim Kunz, Dr. | Contact | 06221 56 4555 | Joachim.Kunz@med.uni-heidelberg.de | |
| Laura Tagliaferri, Dr. | Contact | 06221 56 4555 | Laura.Tagliaferri@med.uni-heidelberg.de |
| Name | Affiliation | Role |
|---|---|---|
| Joachim Kunz, Dr. | Center for Child and Adolescent Medicine, University Medical Center Heidelberg | Principal Investigator |
| Holger Cario, Prof. Dr. | University Hospital Ulm | |
| Regine Grosse, Dr. |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Center for Child and Adolescent Medicine, University Medical Center Heidelberg | Recruiting | Heidelberg | Baden-Wurttemberg | 69124 | Germany |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| Background | Lobitz S. Neugeborenenscreening auf Sichelzellkrankheiten in Deutschland. Kinder- und Jugendmedizin 2017;17(2):82-86 [German] | ||
| 28383793 | Background | Kunz JB, Cario H, Grosse R, Jarisch A, Lobitz S, Kulozik AE. The epidemiology of sickle cell disease in Germany following recent large-scale immigration. Pediatr Blood Cancer. 2017 Jul;64(7). doi: 10.1002/pbc.26550. Epub 2017 Apr 6. | |
| 26658910 |
| Label | URL |
|---|---|
| Official website of the Registry \[German\] | View source |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| ID | Term |
|---|---|
| D000755 | Anemia, Sickle Cell |
| ID | Term |
|---|---|
| D000745 | Anemia, Hemolytic, Congenital |
| D000743 | Anemia, Hemolytic |
| D000740 | Anemia |
| D006402 | Hematologic Diseases |
Not provided
Not provided
| OTHER |
| Charite University, Berlin, Germany | OTHER |
| German Cancer Research Center | OTHER |
| Deutsche Kinderkrebsstiftung | OTHER |
| Pfizer | INDUSTRY |
Not provided
Not provided
Not provided
In addition to the incidence of the disease itself also the treatment received will be reported in comparison to the preceding report (in case of the first report, only the prevalence will be reported as baseline). |
| Baseline and yearly, up to 10 years |
| Andrea Jarisch, Dr. | Johann Wolfgang Goethe University Hospital |
| Andreas Kulozik, Prof. Dr. | University Hospital Heidelberg |
| Stephan Lobitz, Dr. MSc | Gemeinschaftsklinikum Mittelrhein, Koblenz |
| Lena Oevermann | Charite University, Berlin, Germany |
| Background |
| Kunz JB, Awad S, Happich M, Muckenthaler L, Lindner M, Gramer G, Okun JG, Hoffmann GF, Bruckner T, Muckenthaler MU, Kulozik AE. Significant prevalence of sickle cell disease in Southwest Germany: results from a birth cohort study indicate the necessity for newborn screening. Ann Hematol. 2016 Feb;95(3):397-402. doi: 10.1007/s00277-015-2573-y. Epub 2015 Dec 12. |
| 26275168 | Background | Grosse R, Lukacs Z, Cobos PN, Oyen F, Ehmen C, Muntau B, Timmann C, Noack B. The Prevalence of Sickle Cell Disease and Its Implication for Newborn Screening in Germany (Hamburg Metropolitan Area). Pediatr Blood Cancer. 2016 Jan;63(1):168-70. doi: 10.1002/pbc.25706. Epub 2015 Aug 14. |
| 25147811 | Background | Frommel C, Brose A, Klein J, Blankenstein O, Lobitz S. Newborn screening for sickle cell disease: technical and legal aspects of a German pilot study with 38,220 participants. Biomed Res Int. 2014;2014:695828. doi: 10.1155/2014/695828. Epub 2014 Jul 23. |
| 24398797 | Background | Lobitz S, Frommel C, Brose A, Klein J, Blankenstein O. Incidence of sickle cell disease in an unselected cohort of neonates born in Berlin, Germany. Eur J Hum Genet. 2014 Aug;22(8):1051-3. doi: 10.1038/ejhg.2013.286. Epub 2014 Jan 8. |
| 31867835 | Result | Kunz JB, Lobitz S, Grosse R, Oevermann L, Hakimeh D, Jarisch A, Cario H, Beier R, Schenk D, Schneider D, Gross-Wieltsch U, Prokop A, Heine S, Khurana C, Erlacher M, Durken M, Linke C, Fruhwald M, Corbacioglu S, Claviez A, Metzler M, Ebinger M, Full H, Wiesel T, Eberl W, Reinhard H, Tagliaferri L, Allard P, Karapanagiotou-Schenkel I, Rother LM, Beck D, Le Cornet L, Kulozik AE; German Sickle Cell Disease Registry. Sickle cell disease in Germany: Results from a national registry. Pediatr Blood Cancer. 2020 Apr;67(4):e28130. doi: 10.1002/pbc.28130. Epub 2019 Dec 22. |
| 34640578 | Result | Kunz JB, Schlotmann A, Daubenbuchel A, Lobitz S, Jarisch A, Grosse R, Cario H, Oevermann L, Hakimeh D, Tagliaferri L, Kulozik AE. Benefits of a Disease Management Program for Sickle Cell Disease in Germany 2011-2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome. J Clin Med. 2021 Sep 30;10(19):4543. doi: 10.3390/jcm10194543. |
| 34706496 | Result | Allard P, Alhaj N, Lobitz S, Cario H, Jarisch A, Grosse R, Oevermann L, Hakimeh D, Tagliaferri L, Kohne E, Kopp-Schneider A, Kulozik AE, Kunz JB. Genetic modifiers of fetal hemoglobin affect the course of sickle cell disease in patients treated with hydroxyurea. Haematologica. 2022 Jul 1;107(7):1577-1588. doi: 10.3324/haematol.2021.278952. |
| Sickle Cell Disease Guidelines, German language | View source |
| D006425 |
| Hemic and Lymphatic Diseases |
| D006453 | Hemoglobinopathies |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |