Information available for organisation typesTo facilitate the exchange of information and to improve business relations, |
the WMDA provides access to contact data of organisations that are listing donors or cord blood products in the global database of |
Bone Marrow Donors Worldwide (BMDW, www.bmdw.org).Search & Match Service (formerly BMDW). The following information is available: |
Type of organisation| Organisation definitions | Data available |
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Sources | Listing Organisations (DR) Defined as: An organisation listing donors and cord blood products in BMDW. A listing organisation is not a donor registry as defined in the WMDA Standards. | Personal data | appointed organisation profile administrator |
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DR → Donor Registry Definitions as set out in WMDA Standards (version January 1, 2020): An organisation responsible for coordination of the search for hematopoietic stem cells from donors unrelated to the potential recipient. - The patient registry or requesting registry is the registry that acts on behalf of their transplant centres.
- The donor registry or providing registry is the registry that provides the hematopoietic stem cell product.
| - Contact details
- Operational information
- Regulatory
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requirements information (including import- and export requirements)Documents
- survey*
- Documents (e.g. price lists)
- Personal data
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The - only available for WMDA members after login
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WMDA address database Listing organisation | - Personal data can be added or deleted by the organisation profile administrator by filling in a request form. The contact details are updated automatically from the WMDA address database.
- The operational information, regulatory requirements information and (member) documents are updated by the
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listing organisations. Each has identified a registry profile administrator who is responsible for updating the information. | CBB → Cord Blood Bank Definitions as set out in WMDA Standards (version January 1, 2020): A facility responsible for donor management and the collection, processing, testing, cryopreservation, storage, listing, reservation, release, and distribution of cord blood units. | - Contact details
- If the CBB is a listing organisation the following data is also available:
- Cord Blood Bank survey
- Documents (e.g. forms, price lists)
- Personal data only available for WMDA members after login
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registry - organisation profile administrator by filling in a request form.
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Cord Blood Banks (DRCBB) listing directly in BMDW their cord blood products
Defined as:
A cord blood bank listing directly cord blood products in BMDW (not affiliated with a registry)- The contact details are updated automatically from the WMDA address database.
- The (member) documents and cord blood bank operational and technical information are updated by the organisations.
→ In case a cord blood bank is missing, it is possible to provide this information. Please contact the WMDA office (mail@wmda.info) and ask WMDA to set up the webpages of this cord blood bank. | | DR with CBU → Donor Registry that lists both donors and cords | - Contact details
- Operational information
- Regulatory
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requirements information (including import- and export requirements)Documents
Personal data - survey*
- Documents (e.g. price lists)
- Personal data
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The - only available for WMDA members after login
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WMDA address database Cord Blood Bank | - Personal data can be added or deleted by the organisation profile administrator by filling in a request form. The contact details are updated automatically from the WMDA address database.
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- The operational information, regulatory requirements information and (member) documents are updated by the
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listing organisations. Each has identified a registry profile administrator who is responsible for updating the information.Personal data can be added by the registry profile administrator by filling in a request form.
| Cord Blood Banks affiliated with a registry (CBB) | Contact details Cord Blood Bank Information (Technology Survey) Personal data only available for WMDA members after login | WMDA database CBB Survey 2015 | The contact details are updated automatically from the WMDA address database. Cord Blood Banks have provided their information in January/February 2015. In case a cord blood bank is missing it is possible to provide this information. Please contact the WMDA office (mail@wmda.info) and ask for the link. In 2017 the information will be updated. Personal data can be added by the registry profile administrator by filling in a request form. |
Organisations are identified as follows:
Listing organisations have an ION | DC → Donor Centre Definition as set out in WMDA Standards (version January 1, 2020): An organisation responsible for donor recruitment, consenting, testing, management and the collection of donor personal, genetic, medical data. | - Contact details
- Operational information
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| | TC → Transplant Centre |
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* Regulatory Questionnaire import practices EU Member States The EU has a common set of standards to ensure the quality and safety of: - Organs for transplantation, and
- tissues and cells for human use, including reproductive cells
For EU registries to import cells into a EU Member State, the EU Member States must be able to ensure that cells imported under their licences meet the quality and safety requirements set out in the EU tissues and cells Directive 2004/23/EC and its implementing Directives, including 2006/17/EC and 2006/86/EC. This questionnaire will be sent out in 2019. |
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- Listing organisations or donor centres (if approved by the registry) have an ION (Issuing Organisation Number): a globally unique identifier, as issued by
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the - ICCBBA, which maintains the
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authorative . All organisations with an ION are listing donors and/or cord blood units in the global database Bone Marrow Donors Worldwide- .
- All other organisations without an ION are referenced by their WO number, as used by the WMDA internally.
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Description | Number per registry | Information presented on WMDA Share
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WMDA ShareCost implications | | Primary Emergency Contact | Only accessible for WMDA |
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Membersmembers, primary contact point that can be contacted by WMDA members in case of emergency (e.g. |
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workup work-up cancellation, transport problems) |
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This contact is for information purposes only and does not fulfil a specific role with the WMDA.
1None | None |
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Membersmembers, second contact point that can be contacted by WMDA members in case of emergency (e.g. |
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workup work-up cancellation, transport problem) in case the primary contact does not respond |
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This contact is for information purposes only and does not fulfil a specific role with the WMDA.1 | None | None |
| | Organisation Profile Administrator | Only accessible for WMDA |
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Members| members, person responsible |
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maintaining | for updating the registry |
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organisation profile page Multiple permitted | Has edit rights to organisational profile on WMDA Share. | None | WMDA registry representative| and/or cord blood information on WMDA Share (address, contact person, operational information, regulatory information |
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)| , cord blood operational information, cord blood technical information). | Responsible for updating operational and regulatory information
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Members| members, person eligible to serve as the WMDA organisational representative and to vote on behalf of the organisation |
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1 | access to WMDA Share | Included in WMDA membership fee | | . |
| | Medical director | Only accessible for WMDA |
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Membersmembers, medical director |
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This contact is for information purposes only and does not fulfil a specific role with the WMDA.
1 | None | None | | Search coordinator | Only accessible for WMDA |
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Members,members, search coordinator |
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This contact is for information purposes only and does not fulfil a specific role with the WMDA.
Mutliple | None | None | | S(P)EAR alert contact | Only accessible for WMDA |
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Members| members, person who will receive the rapid alerts from the S(P)EAR Committee. |
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Multiple | None | Professional (affliated) | Only accessible for WMDA members, persons who are appointed by the |
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registry to serve as a WMDA member (there is a maximum of persons a registry can appoint, based on the number of donors/cord blood units listed)Limited | access to WMDA Share | Included in WMDA membership fee | WMDA additional professional member | Only accessible for WMDA members, persons who are appointed by the registry | WMDA member organisation to serve as a WMDA member |
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(above the maximum of person)Multiple | access WMDA annual Euro 125 annually | WMDA global trend report
| Only accessible for WMDA members, persons who are appointed by |
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the registry | the WMDA member organisation to fill in the WMDA |
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Annual Questionnaire1 | BMDW Global Trend Report (annual questionnaire)
| Access to annual questionnaire web application |
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None | | Search & Match Registry Registry User | Only accessible for WMDA |
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Members| members, person who will have access to |
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BMDW BMDW | the Search & Match Service. |
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Multiple | BMDW | Access to Search & Match Service |
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Each user incurs a fee charged to the registry | | IT expert for data submission | Only accessible for WMDA |
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Members| members, person who is responsible for the data upload to |
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BMDW | the Search & Match Service |
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| . | Access to data upload facilities of WMDA |
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- The "Watch" feature can be clicked for a space which allows automatic emails to be sent to your address notifying you when information has been edited.
- The "Share" feature allows you to send the page to desired people
- The "…" feature allows you to export certain pages on the space to printable documents
- For registered users (WMDA members) additional/restricted information may be accessed by clicking on
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- This page is publicly visible
- Editing is restricted to the registry profile administrators
- Editing is further restricted on page level to specific persons (record owners)
Information about the It is each organisations designated |
registry organisation profile administrator's responsibility to ensure all information displayed for their organisation is accurate at all times. By compiling, this resource will be a valuable tool for patients, donors, and organisations worldwide. Type of Edit | Title of Tables/Page | Action for editing | Editable by user on page | Operational information, regulatory requirements information and documents |
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Follow instructions in HelpTips document| Please read more details, here. | Not editable by user on page | Contact details, registry information, affiliated organizations, emergency contact, persons and functions, registry closures on main calendar, CBB survey | Must use ‘Edit’ button found on registry page main page by clicking key symbol in additional resource title |
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Any omissions, errors or corrections can be communicated by email to mail@wmda.info
You can read here helpful tips how to maintain and update your information.Save
