Thank you for your interest in contributing to the PURA Biobank
Preliminary information on preregistration
Thank you very much for your interest in donating bio-samples to the PURA Biobank. While this biobank has been established to collect biological samples from patients with PURA syndrome, it also allows for collecting samples from patients with other neurological disorders. Furthermore, the PURA Biobank can also be used to store biological samples from healthy individuals as a control group.
Before considering inquiring about the donation of biosamples, we ask you to read the short summaries of requirements for the different types of biological samples we are accepting. If you are unsure about donating samples or in case of questions that cannot be answered by the descriptions below, feel free to contact us at PURA-Biobank@helmholtz-munich.de. Please also note the different documents available for download, which provide you with a much more detailed description of the requirements, procedures, and ethical framework of the PURA Biobank.
Please note that in the starting phase of the PURA Biobank, we will only accept certain types of biosamples (see below). This might change over time. For each type of biological sample, specific procedures for drawing samples are required. In many but not all cases, hospitals or medical centers are best suited to fulfill those requirements.
If you have any questions or in case you are still unsure after reading the information provided, please do not hesitate to contact us at:
📧 PURA-Biobank@helmholtz-munich.de
Important Notes for Sample Donation
During the initial phase of the PURA Biobank, only specific biosample types will be accepted (see below).
All inquiries must be initiated by a medical professional.
Depending on the sample type, collection may require specific protocols best carried out in hospital or clinical settings.
Accepted Biosample Types and Requirements
Blood / Plasma
Blood and plasma samples from PURA patients are accepted.
Whenever possible, we also encourage donation from a close relative, ideally a sibling, to enhance research outcomes.
Skin Biopsy (Punch Biopsy)
Mainly used for generating induced pluripotent stem cells (iPSCs).
Samples from relatives are not required, but highly valuable.
Cell Lines
We accept primary cell lines or iPSCs that have not exceeded passage 5.
Immortalized cell lines are currently not accepted.
Currently Not Accepted:
Stool
Blood Spot Cards
Tissue (Muscle, Connective, Nervous, Epithelial)
Urine
Saliva
Other materials such as hair, teeth, or nails, as they provide limited value for current research goals.
If you would like to proceed, please be aware that the initial registration and inquiry must be completed by the patient’s physician.