1. chILD-EU 
  2. Patient Referral

Refer a patient to the register

Please supply the documents listed below and send the referring materials to the following address:

Mrs. A. Schams

AG Pneumologie I, Räume KO.10-12 | Forschungszentrum Kubus | Dr. von Haunersches Kinderspital

Lindwurmstraße 2a
80337 München
+49 (0)89 4400 53715 
+49 /(0)89 4400 57715

Samples frozen on dry ice are accepted on Tuesdays, Wednesdays or Thursdays.

Plan shipping so that delivery to the lab is scheduled until 12h on these days.

Please notify lab beforehand. All other samples may arrive anytime.

1 | Consent forms, signed

For potential inclusion of the case in the register, please obtain your patient's informed consent. The consent forms for parents/caregivers, underage as well as adult patients can be downloaded via the Consent Forms Register page.

For genetic diagnostics please use the following PDF form. 

  • All senders from Germany: Be sure to include the Ü-10 laboratory referral for outpatients!

In case CGH array is needed additionally use this form

2 | Epicrisis / brief letter

Best in English so international experts can also contribute.

3 | ChILD-EU visit sheets

Use the visit sheets for the first and also for consecutive visits. This way you automatically capture all necessary information.

4 | Biomaterials

Please send biomaterials always labelled clearly for exact identification of content and safely packed in a closed plastic bag!

Always send this sample shipping sheet for initial samples.

For consecutive samples use sheets with collection numbers generated in Biomaterials in the Register!

The following materials may be shipped at ambient temperature using regular mail:

  • EDTA blood (always triplett: patient (5 -10 ml) + parents (10 ml))
  • Pax/tempus tubes for RNA analysis
  • Lung tissue, wax block or/and slides of lung tissue if available
  • Lung tissue in formalin or/and glutaraldehyde
  • Skin biopsy in culture medium
  • Lung tissue in culture medium

The following materials need to be shipped frozen on dry ice:

  • BAL, frozen tissue samples

Asservation of material from a deceased patient/autopsy/partial lung only autopsy (SOP).

Note: No delivery of samples possible on Fridays, Saturdays and Sundays.

5 | Imaging (X-Ray-Thorax Series, CT)

The imaging data can be sent as CD by regular mail.

You may upload the DICOM files directly into the register if you already have a Data Capture Login.

However, as this may be cumbersome for the inexperienced, we recommend to send a pseudonymized CD, which we will upload for you.

6 | Mandatory steps for sharing genomic sequencing data

Data Transfer and Platform Access: Data transfers may be executed via the collaborator's own secure platform, or alternatively, access can be provided to our secure kumbox platform. To initiate a data transfer and obtain a secure upload link, please send a formal email request to Christina.Rapp@med.uni-muenchen.de.

Technical Requirements & Formats: Genomic data must be submitted exclusively in FastQ, BAM, or CRAM format. Please adhere strictly to the following formatting specifications and check that all files are complete:

  • Every BAM file must be accompanied by its matching index file (.bai) in the same folder, using the exact same base filename.
  • Every CRAM file must be accompanied by its exact reference genome version (including the precise build and patch, e.g., GRCh38.p14) used for the alignment. If a modified or customized reference genome was used, this specific reference genome file must be shared alongside the data.

Thank you for your cooperation. Please do not hesitate to contact us if you have any further questions.