Affected Individuals and Family Members
Why Donate a Sample to BioNER?
Donating a biological sample to the National Rare Diseases Biobank (BioNER) is a valuable contribution to biomedical research. Your collaboration will help advance knowledge of rare diseases by supporting the identification of new biomarkers, improving the understanding of the mechanisms underlying these conditions, and promoting the development of new diagnostic and therapeutic strategies that can improve patients' quality of life.
If you, or a member of your family, have been diagnosed with a rare disease or an Autism Spectrum Disorder (ASD) and would like to contribute to research by donating a biological sample, you can contact BioNER through the “Contact” section of this website or by email at bioner@isciii.es.
With the donor's explicit consent, individuals who contribute samples for rare disease research may be included in the Spanish Rare Diseases Registry for Research (RePER) or other research registries managed by the Institute for Rare Diseases Research (IIER). This facilitates the development of clinical, epidemiological, and natural history studies of these diseases. Likewise, donors with Autism Spectrum Disorders (ASD) may, upon authorization, be included in the corresponding specific research registries.
Institutions and Associations
Patient associations, foundations, and institutions involved in rare diseases or Autism Spectrum Disorders (ASD) can collaborate with BioNER by promoting the donation of biological samples among their members, thereby contributing to the advancement of biomedical research.
The National Rare Diseases Biobank (BioNER) collects biological samples, subject to the signing of the corresponding informed consent form, for storage and use in research projects on rare diseases and Autism Spectrum Disorders. Samples may originate from:
- Voluntary donations made specifically to BioNER, obtained exclusively for research purposes and not for clinical care. These are typically blood samples from individuals diagnosed with a rare disease or an Autism Spectrum Disorder. Inclusion in the biobank requires the donor's signed informed consent and the submission of a medical report confirming the diagnosis.
- Residual samples from research projects, provided that the projects have been approved by a Research Ethics Committee and that appropriate consent has been obtained for their storage and future use.
- Residual samples from clinical or diagnostic activities that would otherwise be discarded, provided their inclusion in the biobank complies with current legislation and the donor's consent has been obtained when required.
Individuals who donate samples for rare disease research may, with their consent, be included in the Spanish Rare Diseases Registry for Research (RePER). Likewise, donors with Autism Spectrum Disorders may be included in the corresponding specific research registries, in accordance with the applicable regulations.
If you would like to donate samples or receive further information about the donation process, please contact BioNER through the "Contact" section of this website or by email at bioner@isciii.es.
