Table of contents
Information available for organisation types
To facilitate the exchange of information and 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).
The following information is available:
| Type of organisation | Data available | Sources | Maintained by |
|---|---|---|---|
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.
| Contact details Operational information Regulatory requirements information (including import- and export requirements) Documents Personal data only available for WMDA members after login | WMDA address database
Listing organisation | The contact details are updated automatically from the WMDA address database. The operational information, regulatory requirements information and documents are updated by the listing organisations. Each organisation 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 (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) | Contact details Operational information Regulatory requirements information (including import- and export requirements) Documents Personal data only available for WMDA members after login | WMDA address database
Cord Blood Bank | The contact details are updated automatically from the WMDA address database.
The operational information, regulatory requirements information and documents are updated by the listing organisations. Each organisation 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 identify
- Listing organisations have an ION (Issuing Organisation Number): a globally unique identifier, as issued by the ICCBBA, which maintains the authorative list of ION's. 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.
| Function | Description | Number per registry | Access to WMDA Share | Cost implications |
|---|---|---|---|---|
| Primary Emergency Contact | Only accessible for WMDA Members, primary contact point that can be contacted by WMDA members in case of emergency (e.g. workup cancellation, transport problems) This contact is for information purposes only and does not fulfil a specific role with the WMDA. | 1 | None | None |
| Secondary Emergency Contact | Only accessible for WMDA Members, second contact point that can be contacted by WMDA members in case of emergency (e.g. workup cancellation, transport problem) in case the primary contact does not respond 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 Members, person responsible maintaining the registry organisation profile page on WMDA Share (address, contact person, operational information, regulatory information) | Multiple permitted | Has edit rights to organisational profile on WMDA Share. | None |
| WMDA registry representative | Only accessible for WMDA Members, person eligible to serve as the WMDA organisational representative and to vote on behalf of the organisation | 1 | access to WMDA Share | Included in WMDA membership fee |
| Medical director | Only accessible for WMDA Members, medical director 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 Members,, search coordinator 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 Members, person who will receive the rapid alerts from the S(P)EAR Committee | Multiple | None | None |
| WMDA Professional member (affliated) | Only accessible for WMDA members, persons who are appointed by the 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 to serve as a WMDA member (above the maximum of person) | Multiple | access to WMDA Share | Euro 125 annually |
| WMDA annual report | Only accessible for WMDA members, persons who are appointed by the registry to fill in the WMDA Annual Questionnaire | 1 | annual questionnaire web application | None |
| BMDW Registry User | Only accessible for WMDA Members, person who will have access to BMDW Search & Match Service | Multiple | BMDW Search & Match Service | Each user incurs a fee charged to the registry |
| BMDW IT expert for data submission | Only accessible for WMDA Members, person who is responsible for the data upload to BMDW Search & Match Service | 1 | None | None |
Helpful Navigation Tips
- 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
Permissions
- 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 and for the organisation profile administrator
It is each organisations designated registry 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 | Follow instructions in HelpTips document |
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 |
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.
Disclaimer
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