EMDIS House Rules

01 May 2012
V2.0

Version 2.0 EMDIS House Rules 2012-05-11


Revision History
Version 2.0 2012-05-01 Version 2.0 approved following the EMDIS User Group Meeting Sydney
Version 1.0 2007-03-23 Version 1.0 approved at the EMDIS User Group Meeting Lyon.
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1. Statement of Purpose

The European Marrow Donor Information System (EMDIS) is a collaborative effort of unrelated donor
registries, set up to facilitate the electronic retrieval and exchange of information in the search for suitable
unrelated grafts of hematopoietic stem cells for particular patients.

The EMDIS organizational structure and rules described within this document shall reflect the procedures
of a working party with a high level of user involvement and a focus on practical issues. Hence, the EMDIS
house rules intend to be simple and easy to follow.


2. Membership

EMDIS membership is open to unrelated donor registries
1
that actively use the EMDIS system (EMDIS
hubs). Membership application has to be submitted to the chair of the EMDIS User Group for review and
be approved by the EMDIS User Group. The member may utilise EMDIS to search for donors, to procure
donors, or both.

It is the responsibility of the member
2.1 to design, manage and maintain the local computer systems including the EMDIS connection to
ensure a smooth operation and evolution of the system.
2.2 to ensure a continuous and qualified system administration taking care of any problems, errors or
warnings in a timely fashion (24 hours response time on working days).
2.3 to ensure that all data entering the EMDIS data exchange has been subjected to rigorous
plausibility controls, taking into account the most recent official or de facto standards, e.g. as
defined by EMDIS, WMDA or WHO.
2.4 to ensure all its duties are performed in a manner that minimises the problems, manual work and
consequential errors for other Users.
2.5 to ensure implementation of the approved EMDIS revisions in the appropriate time frame and that
the implementation is validated. This may be performed by a development team of the registry
itself, through bilateral arrangement with the national team of another user or through a contracted
third party.
2.6 to ensure that any partial implementation of the EMDIS standards adequately realises a consistent
set of tasks and is approved by the EMDIS Technical Group.


3. Organisational structure

3.1 The EMDIS User Group (UG)

3.1.1 The entire User Group is comprised of registry personnel regularly using EMDIS. One
named individual per EMDIS hub is assigned voting rights (the primary User) for the entire
registry. This individual typically has considerable professional expertise as search
coordinator or in daily work with EMDIS.
3.1.2 Each User will have one vote in matters brought to the User Group.
3.1.3 Representation and voting rights can be passed to a proxy if the designated User is not
able to attend a UG meeting in person. The proxy must be announced to the chairman
before the meeting and has to belong to the same registry as the primary User.
3.1.4 The UG has a chairman and a vice chairman elected from the entire User Group.
3.1.5 Chairman and vice chairman have to be from different member registries.
3.1.6 Chairman and vice chairman must be the voting users of their registries.
3.1.7 The vice chairman will function as the active chairman in the absence of the chairman.
3.1.8 It is the responsibility of the User Group, in general, and its chairs, in particular, to:
3.1.8.1 coordinate the advancement of EMDIS to achieve the goals of the network.
3.1.8.2 sanction and approve new EMDIS Users.
3.1.8.3 validate and prioritise User needs.
3.1.8.4 liaise with the Technical Group over specifications, time-tables, and feasibility of
requirements.
3.1.8.5 prepare meetings, produce minutes and communicate with the Users.

1
Conforming to the WMDA definition
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3.2 The EMDIS Technical Group (TG)

3.2.1 The Technical Group is comprised of registry technical personnel regularly using,
managing, developing and supporting EMDIS. One named individual per registry is
assigned voting rights (IT representative) for the entire registry. This person typically has
considerable professional expertise in IT.
3.2.2 Each representative will have one vote in matters brought to the Technical Group.
3.2.3 Representation and voting rights can be passed to a proxy if the designated representative
is not able to attend a TG meeting in person. The proxy must be announced to the chair
before the meeting and has to belong to the same registry as the representative.
3.2.4 The TG has a chairman and a vice chairman elected from and by the TG members.
3.2.5 Chairman and vice chairman have to be from different member registries.
3.2.6 Chairman and vice chairman must be the voting representatives of their registries.
3.2.7 The vice chairman will function as the active chairman in the absence of the chairman.
3.2.8 The Technical Group may obtain additional individuals with specific skills to assist on
particular projects.
3.2.9 It is the responsibility of the Technical Group, in general, and its chairmen, in particular, to:
3.2.9.1 protect the integrity of the EMDIS system, technology and infrastructure.
3.2.9.2 define technical requirements for the participation in EMDIS, define interfacing
rules and prepare the necessary documentation.
3.2.9.3 review proposals for new developments emanating from the User Group.
3.2.9.4 prepare specifications and timetables for implementation by national
development teams.
3.2.9.5 liaise with the User Group and the national development teams of the member
registries.
3.2.9.6 provide technical information to members, particularly newly participating
registries and those interested in becoming members.
3.2.9.7 prepare meetings, produce minutes and communicate with the representatives.

3.3 The Advisory Committee (AC)

3.3.1 The Advisory Committee is an adhoc committee composed of senior thought leaders from
the EMDIS member registry community.
3.3.2 The AC can be convened at the request of the chairman/vice chairman of the UG or TG in
response to a member requests for a House Rules review, the need for an election, a
governance question or any other issue or complexity that concerns the overall EMDIS
community and its strategic operation.
3.3.3 The AC may recommend actions or steps to address or remediate such requests, or
commission a committee, group or task force to further study an issue or oversee an action
to its successful conclusion.
3.3.4 The AC shall be called as a safeguard in emergencies or other unclear/difficult situations
3.3.5 The members of the AC may be nominated by any User Group member. A member may
also nominate himself as a candidate to serve on the AC. Final selection is determined
based on User Group majority approval.

3.4 The Election Committee (EC)

3.4.1 The Election Committee (EC) is commissioned by the Advisory Committee to manage the
election process for the User Group and Technical Group chairman and vice-chairman
roles. The EC consists of no more than three users from different member registries who
have proven experience with the strategic and operational processes using EMDIS
throughout the field.
3.4.2 The members of the EC are not allowed to vote themselves.
3.4.3 The EC serves for one election period only and has one chairman assigned by the
Advisory Committee.
3.4.4 It is the responsibility of the EC chairman to:
3.4.4.1 establish a voting process in conjunction with the EC members
3.4.4.2 oversee the management and administration of the voting process during the
election
3.4.4.3 ensure that votes are collected on a timely basis from the members during the
election
3.4.4.4 verify that votes received are from the appropriate registry representative
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3.4.4.5 announce the winners of the election

3.4.5 It is the responsibility of the EC to:
3.4.5.1 oversee the nomination process ensuring the suitability of the candidates, terms
served, position diversity (no two chairs from one EMDIS member registry, no
chairman and vice chairman of one group (UG or TG) from one EMDIS member
registry
3.4.5.2 Assist the EC chairman in the organization, management and administration of the
voting process


4. Election of chairmen and vice chairmen

4.1 All chairman and vice chairman positions will be filled through election.
4.2 Chairmen and vice chairmen are elected for a term of two years. A chairman and vice chairman
may serve no more than two terms in the same position, renewable by election. Chairmen and vice
chairmen serve from January 1 through December 31.
4.3 A vice chairman that has just completed a full four-year term as a vice chairman can serve as
chairman for a new term of two years.
4.4 The chairman for the UG and TG may not be from the same registry. Likewise, no registry may
have members serving in the chairman/vice chairman roles for the same group (UG or TG).
Members from the same registry may serve as chairman of one group and vice chairman of the
other.
4.5 A chairman / vice chairman must have / be:
4.5.1 Oversight of the responsibilities in his own registry
4.5.2 Time and commitment
4.5.3 Sense of collaboration and cooperation
4.5.4 Two years professional experience in a registry operating EMDIS for 2 years
4.5.5 Thought leader / contributor in their respected profession
4.5.6 No commercial interest in providing an operational or technical solution to registry search
and/or facilitation
4.5.7 Represent the interests of all EMDIS members
4.6 The nomination and election procedure should be conducted by email.
4.7 A written call for nominations for all chairmen and vice chairmen positions will be sent by the
chairman of the election committee to the Users and IT representatives on July 1
st
or the nearest
working day.
4.8 The nomination form will require an abbreviated curriculum vita and a signature attesting the
willingness to serve.
4.9 Each nomination must be sponsored by three voting members (not including the candidate).
4.10 A separate nomination form will be prepared for each open position.
4.11 The nomination form will list the responsibilities of the position.
4.12 The nomination deadline is 15
th
August.
4.13 Ballots will be distributed on 15
th
September or nearest working day to the users and
representatives.
4.14 Each User/Representative may cast only one vote for each open position.
4.15 Ballots are anonymous. They must be completed and returned to the Chairman of the Election
Committee by facsimile or mail, to arrive by 15
th
October.
4.16 The Election Committee will ensure validity of votes and tally the votes for each candidate.
4.17 Where one candidate only is nominated there will be no balloting.
4.18 Chairmen and vice chairmen are elected with simple majority. Equal votes require another ballot.
4.19 The results of the elections are presented by the EC chairman at the fall meeting otherwise per
mail.
4.20 If one position becomes vacant for any reason during the term, the Advisory Committee will decide
upon the necessary actions


5. RFC Procedures

5.1 The EMDIS development is driven by request for comments (RFCs).
5.2 The EMDIS members will request developments or revisions to EMDIS using a standard format for
RFCs, as determined by UG and TG.
5.3 RFCs have to reflect the user and IT components involved before issued.
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5.4 RFCs are issued to the chairs for review. After review the chairmen coordinate the appropriate
publication.
5.5 A RFC must be supported by two other EMDIS members when submitted to the community for
discussion.
5.6 RFCs are presented to the UG for final approval. Decisions upon RFCs have to be documented in
the minutes.
5.7 A RFC requires a two-thirds majority of the delegates to be accepted.
5.8 Accepted RFCs are prioritised by the UG and forwarded to the TG.
5.9 The TG develops an implementation plan and schedule for the accepted RFCs for approval by the
UG.
5.10 Any issues with RFCs coming up during specification in the TG are reported back to the UG to be
resolved.


6. Meetings

6.1 Meetings usually take place at the WMDA meetings.
6.2 The meeting of the TG shall be scheduled after the UG meeting.
6.3 The TG chairman and/or vice chairman are present at the UG meetings.
6.4 The UG chairman and/or vice chairman are present at the TG meetings if necessary.
6.5 The vice-chairmen will coordinate the timely production and distribution of meeting agendas and
minutes for all meetings.
6.6 Guests are permitted to attend the meetings if they have the previous approval of the chairman.


7. Alterations to House Rules

7.1 Alterations to house rules may be proposed by any EMDIS member.
7.2 The proposed alterations and a ballot will be mailed to all EMDIS Users.
7.3 All ballots received by the due date will be tabulated.
7.4 The proposed alterations will require a two-thirds majority of all eligible voting members in favour
for approval.
7.5 The results of the balloting will be announced in writing, within 30 days.


8. Projects within EMDIS

8.1 Initiatives outside the EMDIS main development are possible after general agreement within the
EMDIS community.
8.2 Aims, organization and progress of initiatives are communicated to the UG and TG.