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titleInformation

Table of Contents

Information available for organisation types
Wmdabutton
buttontextGo to organisation information database
buttonlinkhttps://share.wmda.info/display/WMDAREG/Database

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titleOrganisation definitions

Organisation definitions

To facilitate the exchange of information and to improve business relations, WMDA provides access to contact data of organisations that are listing donors or cord blood products in the global database of Search & Match Service (formerly BMDW).

The following information is available:

Type of organisation
Organisation definitionsData available
Sources
Maintained by

Listing Organisations (DR)

Defined as:

An organisation listing donors and cord blood products in the Search & Match Service directly or through another organisation and that has a registered ION. A listing organisation is not a donor registry as defined in the WMDA Standards
appointed organisation profile administrator

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
requirements information (including import- and export requirements)

Documents

Personal data The
  • survey*
  • Documents (e.g. price lists)
  • Personal data only available for WMDA members after login

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
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

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
  • 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.
Cord Blood Banks 
  • The (
DRCBB) listing directly their cord blood products in the Search & Match Service.

Defined as:

A cord blood bank listing directly cord blood products in Seach & Match Service (not affiliated with a registry)
  • 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
requirements information (including import- and export requirements)

Documents

Personal data The
  • survey*
  • Documents (e.g. price lists)
  • Personal data only available for WMDA members after login

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.
  • The operational information, regulatory requirements information and (member) 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 2018 the information will be updated.

Personal data can be added by the registry profile administrator by filling in a request form.

Excerpt

Organisations identify

Organisations are identified as follows: Listing organisations have an ION 
  • profile administrator

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

TC → Transplant Centre


Data available

* 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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Roles defined

Excerpt
  • Listing organisations or donor centres (if approved by the registry) have an ION (Issuing Organisation Number): a globally unique identifier, as issued by ICCBBA, which maintains
the authorative
  • the official list of ION's.
All organisations with an ION are listing donors and/or cord blood units in the global database Search & Match Service.Number per registry
  • All other organisations without an ION are referenced by their WO number, as used by the WMDA internally.
Function
Description
Information presented on WMDA Share
Access to
WMDA ShareCost 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

work-up cancellation, transport problems)

This contact is for information purposes only and does not fulfill a specific role within WMDA.

1NoneNone

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

work-up cancellation, transport problem) in case the primary contact does not respond

This contact is for information purposes only and does not fulfill a specific role within WMDA.

1NoneNone


Organisation Profile AdministratorOnly accessible for WMDA members, person responsible for
maintaining
updating the registry
organisation profile page WMDA registry representative
and/or cord blood information on WMDA Share (address, contact person, operational information, regulatory information, cord blood operational information, cord blood technical information).
Multiple Has edit rights to organisational profile on WMDA Share.None
Responsible for updating operational and regulatory information
WMDA voting member
Only accessible for WMDA members, person eligible to serve as the WMDA organisational representative and to vote on behalf of the organisation.
1Access 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 fulfill a specific role with the WMDA.

1None
None
Search coordinator

Only accessible for WMDA members, search coordinator

This contact is for information purposes only and does not fulfill a specific role with the WMDA.

MultipleNone

None
S(P)EAR alert contactOnly accessible for WMDA members, person who will receive the rapid alerts from the S(P)EAR Committee.
Multiple
None
None
WMDA member
- free of charge
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).LimitedAccess to WMDA ShareIncluded in WMDA membership feeAdditional WMDA memberOnly accessible for WMDA members, persons who are appointed by the registry Multiple
WMDA member organisation to serve as a WMDA member
(above the maximum of persons).

Access to WMDA Share
Annual fee
WMDA
annual
global trend report
Only accessible for WMDA members, persons who are appointed by
the registry
the WMDA member organisation to fill in the WMDA
Annual Questionnaire.1Annual
Global Trend Report (annual questionnaire)
Access to annual questionnaire web application
None
Search & Match Registry Registry UserOnly accessible for WMDA members, person who will have access to the Search & Match Service.
Multiple
Access to Search & Match Service
Each user incurs a fee charged to the registryNone
IT expert for data submissionOnly accessible for WMDA members, person who is responsible for the data upload to the Search & Match Service.
1None
Access to data upload facilities of WMDA

Permissions

  • This page is publicly visible
  • Editing is restricted to the organisation profile administrators
  • Editing is further restricted on page level to specific persons (record owners) 
Information about and for the
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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
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Responsibilities organisation profile administrator

It is each organisations designated 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

Follow instructions in Helpful Tips 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

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.

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Disclaimer

The WMDA makes no representations or express or implied warranties regarding any information on this site or obtained through these links; expressly disclaims all legal liability and responsibility for the accuracy, completeness, currency, suitability, validity, or usefulness of such information; and is not and will not be liable for any statements, errors, or omissions in posted information, or for any losses, injuries, or damages that arise or are alleged to arise from such information. Use of any information provided on this site does not and is not intended to create a contractual or other relationship.  All information is provided on an as-is basis. All rights are reserved to remove any information posted on the site.


You may not conduct any systematic or automated data collection activities (including without limitation scraping, data mining, data extraction and data harvesting) on or in relation to our website without our express written consent.
You may not access or otherwise interact with our website using any robot, spider or other automated means, or violate the directives set out in the robots.txt file for our website.
You may not use data collected from our website for ANY (direct) marketing activity.Save