1.FOR RESEARCHERS
1.1.Do I need to register to use the Sample Catalogue?
No, the Sample Catalogue is an open resource that is accessible without login or payment.
1.2.How do I request access to samples in the Sample Catalogue
At the moment we are still working on the integration of the Sample Catalogue with the BBMRI-ERIC Negotiator. For the moment you can use the download function to download a list of samples of interest and contact the biobanks directly. The biobank contact details can be found within the Sample Catalogue. Some of the biobanks might use their own request portal for which you need to register first.
1.3.Do I have to pay for the samples?
In most cases the biobanks will charge you a cost recovery fee to cover the costs of processing, storing and preparation for shipment. Usually you will also have to cover the courier cost to send the samples. However there is no additional fee for requesting samples through the Sample Catalogue.
1.4.Who decides whether my request for samples is granted?
Each biobank is responsible for handling the approval of sample requests, and RD-Connect is not involved in this process. The RD-Connect Sample Catalogue is only helping you find the samples matching your research needs.
1.5.Do I require an ethical review board approval before requesting the samples?
It is not mandatory to already have ethical approval prior to making a request for the samples. However, we do ask for the status of the ethical approval (present/not present) is it will be cited in the eventual Material Transfer Agreement.
1.6.How do I cite the Sample Catalogue?
We are currently writing the paper for the Sample Catalogue, please cite the RD-Connect Sample Catalogue paper when it is available. Until then, please cite the Sample Catalogue by it’s URL: https://samples.rd-connect.eu/ and the main RD-Connect publication:
1.7.How do I acknowledge the biobanks in my publication?
The default recognition for the biobank providing the samples is to state it in the acknowledgements. Sometimes if a research collaboration is initiated, the biobank may request co-authorship for the publication.
1.8.Can I obtain patient clinical information associated to the biological samples?
The associated clinical data is not provided by the Sample Catalogue. Most often the biobanks do not hold extensive clinical information related to the samples. If you require clinical data for your research, it is worth specifying this with your sample request, on occasion it may be possible for biobanks to obtain more data from referring clinical centres.
1.9.Which biobanks store the samples listed in the Sample Catalogue?
The samples listed in the Sample Catalogue are provided by biobanks in the EuroBioBank network. EuroBioBank is a unique network of rare disease biobanks that stores and distributes quality DNA, cell and tissue samples for scientists conducting research. The network was founded in 2001 and currently consists of 25 RD biobanks located in 11 countries. Any biobank with RD sample collections from anywhere in the world are welcomed to share their sample collection data to the Sample Catalogue and join EuroBioBank.
1.10.I cannot find the samples I need, is it possible to ask the biobanks to collect a new sample?
Sometimes it may be possible for a biobank to collect a new biological sample based on a request. You can make the service request directly to the biobank(s) by detailing your sample needs in order to check if your requirements can be fulfilled.
2.FOR PATIENTS
2.1.What is a human biological sample?
A biological sample is material derived from humans such as urine, blood, tissue, cells, DNA, RNA, and protein.
2.2.What is a biobank?
Biobank is an organized collection of human biological samples and associated information from patients or healthy individuals. Biobanks store and distribute biological samples for one or more research purposes.
2.3.What are samples used for? Who is using them?
Biological samples stored in a biobank can be used for diagnosis and/or research purposes. Samples and associated information can be used by clinicians for diagnosis purposes, or by the scientific community for research purposes. Sample and data access are regulated by defined rules set up by biobanks to protect participant’s interests.
2.4.How do I remove my samples from the catalogue?
All samples data in the Sample Catalogue are provided by the biobank based on informed consent. If you do not want to have your samples available for research, you should contact the biobank or clinician who initially asked your consent to withdraw consent for sharing your samples for research through the Sample Catalogue.
2.6.As a patient organisation, can we collaborate with biobanks to set up sample collections?
Patient organisations may be interested to collaborate with a biobank to initiate a disease-specific sample collection. This is possible and some member biobanks are experienced in setting up such collaboration. The experiences and recommendations are published in this article Baldo et al., 2016.
3.FOR BIOBANKS
3.1.How do I include my samples in the Sample Catalogue?
The first step is to register your biobank in the Registry & Biobank Finder. Once your biobank is registered in the Biobank & Registry Finder, you can download the Sample Catalogue Template for sample upload and prepare the file with the required sample information to upload in the catalogue. When you have prepared your file, contact the data management team at molgenis-support@umcg.nl to setup your staging area in the Sample Catalogue.
When the first sample data has been uploaded you will receive an account for the Sample Catalogue to maintain the data in your staging area in the future.
3.2.How can I register an account to the Sample Catalogue to initiate data upload?
After proposing the biobank via the Registry & Biobank Finder, the biobank manager / submitter will get a personal secure access to the registration questionnaire. A panel of internationally recognised biobanking experts (Panel for Biobank Assessment) will review the biobanks against a set of criteria to ensure minimum quality assurance is met.
3.3.We don’t have a molecular diagnosis, how should we specify the disease?
The diagnosis is coded using two fields: 1) the Disease field, which contains the Orphanet Rare Disease Ontology code for the diagnosed disease and 2) the Diagnosis Type, which contains the method by which the diagnosis was established. If you don’t have a molecular diagnosis that can establish the exact (subtype) of the disease, you specify the more generic code from the Orphanet Rare Disease Ontology in the Disease field, while the Diagnosis Type will specify the type of diagnosis, e.g. Clinical if it is only based on clinical phenotypes.
3.4.How do I specify undiagnosed cases?
Undiagnosed cases can be specified with the NCI Thesaurus code for undiagnosed (urn:miriam:ncit:C113725) in the Disease field.
3.5.How do I specify that samples are from (healthy) carriers?
Healthy carriers can be identified with the NCI Thesaurus code for a healthy subject (urn:miriam:ncit:C49651) in the Disease field.
3.6.How do I include samples that are from controls?
Controls can be identifier with the NCI Thesaurus code for a healthy control (urn:miriam:ncit:C94342) in the Disease field.
3.7.Do I report aliquots or samples?
You should register samples in the Sample Catalogue.
3.8.Do I have to pseudonomize my samples?
Yes, all sample data in the catalogue MUST be pseudonymized by the biobank before uploading to the Sample Catalogue.
3.9.Will RD-Connect decide how the samples from my biobank are used?
No, the RD-Connect Sample Catalogue only helps to make your biobank visible for researchers. You still remain in full control of the handling of requests and all requests will still go through your normal approval process.
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