Patient Registration
Logistics for the EurAPS biobank and patient registry
Last updated 2006-10-20
If you do not have registry on patients with APS1, we have compiled a patient information and informed consent template available on our webpages. A list of collaborators in each country along with contact information is also provided see list. Your country’s liaison can then be contacted to help with the inclusion.
Download Registration PDF here
Registration:
Patients with known or suspected APS I can be recruited by obtaining:
- Informed consent
- Collecting clinical information by filling in the registration form
- Collecting a blood sample
Practical procedure:
Informed consent
Use the informed consent used at your medical centre or another centre in your country. If none is available it is recommended to apply to your local ethical committee for approval to recruit patients to the registry. Prof. Eystein Husebye or Prof. Olle Kämpe can be contacted to facilitate the process. You will find an English version of the patient information here.
Collecting clinical information by filling in the registration form
Use the form located here. Please complete the information together with the patient. A number of rare manifestations are also listed. This will hopefully enable us to obtain reliable frequencies on the rarer manifestations. If the patient has other manifestations or diseases then those listed, please include them in the text.
Collecting a blood sample
We would like to obtain a minimum of 5 mL EDTA blood and 10 mL serum from each patient. Samples can be sent fresh by airmail or frozen at your laboratory and sent on dry ice. The latter i preferable, especially if several samples are collected and sent together. Please contact prof. Eystein Husebye (eystein.husebye@med.uib.no) for more information on shipping. The EurAPS consortium will pay for transport. If shipment is done by airmail, please use the following address:
Prof. Eystein Husebye
Department of Medicine
Haukeland University Hospital
N-5021 Bergen
Norway
Phone +47-55973078, fax +47-55972950,
e-mail: eystein.husebye@med.uib.no