UK
National support UK
You want
1) diagnostic tests (not for free)
2) help with input of data or
3) to include a case
please supply the following documents and materials:
3.1 ) Signed patient consent form
For potential inclusion of the case in the register, please obtain your patient's informed consent. The patient information brochures for the appropriate age can be downloaded below:
Patient under the age of 16
* 
Informed Consent for Parental Blood
* Informed Consent for Child 6 to 10 years
* Informed Consent for Child 11 to 15 years
Patients over the age of 16 (or, in Scotland only, a patient under the age of 16 considered by the treating clinician to have capacity to consent)
* Informed Consent for Competent Child
The signed patient's consent forms can be send by fax (+49 89 4400-5-7715) or regular mail.
3.2) Case overview (Referral Letter)
The case will be peer reviewed by international experts. For this purpose, a brief case overview in English (referral letter) will be required.
This letter can be send by E-mail / regular mail / fax.
You may upload directly into the register if you already have a Login to the register and the patient has been created as a "New Patient" in the register.
3.3) Sample / Biomaterials
Please send, using the sample shipping sheet,
- immediately by regular mail at ambient temperature: EDTA blood: patient (5 -10 ml) + parents (10 ml)), wax block, slides
- frozen: BAL, tissue
for details see (Labmanual)
Note: No delivery of samples possible on Fridays, Saturdays and Sundays.
3.4) Previous discharge letters (may be in local language)
The previous discharge letters can be send by e-mail*, regular mail or fax and we can upload the documents for you. Alternatively you may upload the documents directly into the register if you already have a login to the register and the patient has been created as a "New Patient" in the register.
3.5) Imaging (X-Ray-Thorax Series, CT)
You may upload the files directly into the register if you already have a login to the register.
Alternatively the imaging data can be send as CD by regular mail. JPGs can be send by e-mail*. If you wish, we can provide you with a personal and secure link for upload of DICOM files in our databox system (please contact us by e-mail) and we can upload the files for you.
* Take care to send pseudonomyzed documents.
