Guidelines

This consortium will be known as the International Consortium for Dementia with Lewy Bodies (IC-DLB).
It represents a consortium of scientific and clinical investigators from international institutions who are
committed to cooperative planning, implementation, analysis, and reporting of research about Dementia with
Lewy Bodies (DLB).

II: Mission and Objectives

The overall mission of the IC-DLB is to bring together clinicians, scientists, and other stakeholders to
advance the knowledge, practice, and research pertaining to DLB and its related conditions.
The overarching objective of the consortium is to understand the pathophysiology and clinical presentations
of DLB, and to use this information to develop interventions to prevent and/or treat DLB. To help achieve
these objectives, the IC-DLB will seek:
A. To have regular international meetings that bring together researchers from various scientific and clinical
disciplines who are working in the field of DLB.
B. To advance knowledge about the etiology, pathogenesis, clinical impact, treatment, and prevention of
DLB and related disorders (e.g., Parkinson’s disease dementia).
C. To inform clinicians, researchers, industry, the general public and other interested parties (e.g.
advocacy groups, Foundations, etc..) of the results and implications of current research in this area.
D. To create a research collaborative consortium that will develop research proposals; develop and
validate outcome measures; perform research projects including clinical trials; and attempt to set up a
data sharing platform.

III: Structure

IC-DLB, founded in 2025, is organized as an independent, nonprofit consortium of scientific and clinical
investigators who conduct research at the institutions with which they are affiliated. The views of the ICDLB do not necessarily represent the views of the institutions with which the investigators are affiliated or
those of any individual IC-DLB member.
IV: MEMBERSHIP

IV: Membership

Voting Members will include all Active Members. An active membership is maintained by members who
have been active by attending an IC-DLB meeting within the past four years, and /or participating in any
ongoing DLB related project, and/or are active members of any IC-DLB committees, and/or becoming active
IC-DLB members within the past four years. Each voting member will have one vote. Votes are not
transferable to other persons and cannot be cast as a proxy in instances when the presence of the voting
member is required. Only active members may hold office. Any member may resign at any time by giving
written notice to the Secretary.
Affiliated members may include any person with interests consistent with the stated goals of the IC-DLB.
This may include, but is not limited to, former active members who volunteered to withdraw from active
membership but remain involved, representatives from industry, Foundations, and patient advocacy groups.
Affiliated members have no voting rights.
Approval of a new member’s application to become a member will take place at every Executive Committee
meeting. New members can be self-nominated or nominated by an active IC-DLB member. The credentials
of the applicant will be reviewed by the Executive Committee, or a subcommittee appointed by the Chair
(i.e., Membership Committee). There are no definitive criteria for new membership, however, it is expected
that members have already meaningfully contributed to the field of DLB research. The Executive
Committee will vote on approval. A majority of the received votes is necessary to approve the proposed
member. A vote is only valid if 2/3 of current members of the Executive Committee cast a ballot. A
negative vote will require a statement of reason to be submitted explaining the negative vote. If approved,
the Executive Committee will send a letter of invitation (including electronic communication) to the
approved nominee.

V: Officers

The Executive Committee of the IC-DLB will consist of a Chair, Vice-chair, Secretary and 4 at-large
members, all of whom are elected by the voting members. The Chair and Vice-chair must be from different
institutions. The Chair and Vice-chair will hold terms of four years and may be elected to succeed themselves
for up to two consecutive terms. The Vice-chair will be eligible to be elected to Chair after the completion of
their term. The Chair is not eligible to be nominated for the Vice-chair position but can serve on the
Executive Committee following the period of their term. The Executive Committee members will hold terms
of four years and may be elected to succeed themselves for up to two consecutive terms. The Chair of the
Executive Committee shall appoint ex officio members of the Executive Committee to act as Standing
Committee chairs. Ex officio members of the Executive Committee will not be able to vote on Executive
Committee matters. All officers are required to be active members of the IC-DLB.
Chair, Vice-chair. The Chair shall be the chief executive officer of the organization, shall preside at
meetings of the Executive Committee and Business Meeting of the consortium, shall be responsible for
executing policies determined by the Executive Committee, shall act as spokesperson for IC-DLB, and shall
see that all Orders and Resolutions are carried into effect. The Vice-chair shall assist the Chair when
necessary.
The Secretary. The Secretary shall assist in carrying out the functions of IC-DLB under the direction
of the Executive Committee. The Secretary shall assist the Chair, particularly in the organization of the next
meeting, shall be responsible for the minutes of all Executive Committee meetings and the General Business
Meeting, and any special meetings. The Secretary shall have signatory powers jointly with the Chair and
shall maintain and have custody of the records of the consortium. The Secretary will oversee elections.
Vacancies. Should the office of Chair become vacant, the Vice-chair shall become Chair. Should the
office of Secretary become vacant, a new Secretary shall be nominated by the Chair and voted by Executive
Committee meeting by simple majority of votes of the Executive Committee. Should the position of Vice-chair become vacant, a replacement shall be elected by the same procedure.
Removal from Office. An Officer who is found to carry out the duties of office in a manner counter
to the interests of the consortium may be removed from the office by vote of four of the seven members of
the Executive committee.

VI: Executive Committee

The IC-DLB Executive Committee will consist of the Chair, Vice-chair, Secretary and four at-large members
who are elected by the voting members. A quorum of the Executive Committee shall consist of five of the
seven Members. The Executive Committee shall meet at least twice each calendar year including an inperson meeting at meetings of the Consortium and report through the Chair to the membership in annual
reports and at the general IC-DLB meeting.
The Executive Committee shall be responsible for:

• Reviewing and approving the appointments of any administrative persons and IC-DLB committees.
• Managing officer elections.
• Reviewing and approving new member applications.
• Overseeing the program and activities of the IC-DLB including the international meetings,
• symposia/webinars, dissemination, and other administrative and scientific activities.
• Formulating and maintaining current and accurate listings of voting and members and of other
• qualified investigators who request participation in IC-DLB studies.
• Proposing and overseeing the assessment and collection of dues, fees or surcharges for the IC-DLB, if
• instituted.
• Replacing unexpected vacancies. All unexpected vacancies in executive committee positions shall be
• filled by nomination by the Chair from the list of Regular Members and election by Executive
• Committee by simple majority of votes.
• Developing and supporting the scientific projects of the IC-DLB including but not limited to the
• review and approval of research protocols, principal investigators, co-principal investigators and
• steering committees for these research projects.

Formulating and maintaining standards for the IC-DLB regarding the conduct of any future trials,
publication policies and conflict of interest guidelines. All research will be conducted according to the
Declaration of Helsinki and according to Good Clinical Practice Guidelines.

VII: Nominations And Elections

Elections for the Chair, the Vice-chair, Secretary and Executive Committee members will be held every four
years by email ballot, with the majority of total votes received from voting members required for election.
Within 3 months prior to each election, nominations for a slate of officers and members of the Executive
Committee shall be solicited from among voting members. The slate of candidates will be emailed by the
Secretary to all members. All voting members of the IC-DLB shall have the opportunity to nominate other
candidates from the membership by emailing their preference to the Executive Committee. The Executive
Committee shall close the nominations one month after sending out the solicitation of nominations. Voting
members need to receive nominations from at least three voting members in order to be declared an official
candidate. A voting member of the IC-DLB may not be on the ballot for more than one position. The
Secretary will oversee the election, ensuring that voting members are accorded their rightful votes, and will
declare the winners of the election.
Initially, interim officers will be appointed and hold office until the first elections are held. The first election
of Chair, Vice-chair, Secretary and other Executive Committee members will take place by anonymous
written ballot following the adoption of the Guidelines. The four at-large members of the Executive
Committee will be elected on the same ballot. Given the staggered terms, 2 of these appointees shall serve a
4-year term, and 2 will serve a 2-year term. All may run for a second term.

VIII: IC-DLB Offices

The offices of the IC-DLB are located at the office of the Chair.

IX: Meetings

The International IC-DLB Meeting. IC-DLB will aim to hold a general meeting once every 2 years. At each
meeting, the Executive Committee shall hold a meeting chaired by the current Chair at which one or more
countries shall be nominated to become the venue for the biennial meeting after the next and the site host
who will develop a Steering Committee.
Business Meetings. The IC-DLB shall hold a business meeting of its membership every 2 years at the time of
its biennial meeting. At least a majority of voting members shall constitute a quorum for the transaction of
business of the IC-DLB.
Notice of Meetings. The Secretary or the Chair of the IC-DLB shall give notice of the next meeting and any
special meetings of the membership as a whole by e-mailing a notice stating the place, day and time of the
meeting and posting it on the IC-DLB website, and in case of a special meeting, the purpose for which the
meeting is called. Notice of special meetings shall be made not less than thirty days before the meeting date.
IC-DLB Website. The Society shall develop and maintain a permanent website for the purposes of
maintaining and disseminating information about the consortium and the biennial meetings. The Chair (or
designee as per Article X) shall be responsible for the maintenance of the website and its content, which shall
contain, at a minimum, a copy of the current guidelines, a list of the current Officers and Council
membership, and information about the next biennial meeting as soon as such information becomes
available. Other content, including active research and educational resources shall be posted, at the approval
of the Executive Committee.

X: Committees

The Executive Committee may appoint other committees to act for the consortium for special purposes,
designating their duties and powers in the resolution of appointment. Such a resolution may be adopted by a
majority of the Executive board members. The Chair, with the approval of the Executive Committee, may
also appoint special committees, designating the members and chairpersons, as well as the function of these
committees. Unless reappointed by the incoming Chair, such special committees shall cease to function upon
the conclusion of the term of the Chair who appointed them. Such committees could for example include:
Research, Lay Public Relations, Industry Relationships, Relationships with other Key Scientific
Bodies/Organisations, Clinical Trials, Membership, Website, etc. Such committees may potentially be
aligned with other existing processes, such as active Professional Interest Area study groups.

XI: Amendments

Amendments to the Guidelines may be proposed by any active member in writing, signed by at least
4 other active members, and submitted to the Executive Committee. On resolution by majority of
the Executive Committee, these Guidelines may be amended by a simple majority of votes cast at
the General Business Meeting of the organization. Changes in the Guidelines shall go into effect
following their adoption at the General Business Meeting.

XII: Dues, Fees, Surcharges, Income

The Executive Committee may propose dues for IC-DLB members and fees or surcharges in order to support
IC-DLB activities, including but not limited to the planning and implementation of studies, scientific and
educational symposia, maintaining the website and its international meeting. Proposals of the Executive
Committee for dues, fees or surcharges will require approval by a majority of votes received from IC-DLB
members who respond. The Executive Committee would also need to amend the Guidelines to create the
position of a dedicated Treasurer who would be responsible for accurate accounting of the money received
and expended by the IC-DLB and a summary would be presented to the membership at least once annually.
If the collection of dues, fees or surcharges were to be instituted, the IC-DLB would also need to explore the
formal registration of their non-profit status.

XIII: Dissolution of the IC-DLB

The dissolution of the IC-DLB shall be decided by an affirmative vote by written ballot of three-fourths of
votes of voting members of the IC-DLB who respond. The procedure on dissolution shall follow that
outlined for proposing amendments in XI. In the event of the dissolution or termination of the consortium,
title to the possession of all the property of the incorporated organization shall pass forthwith to such
organization or organizations that in the opinion of the Executive Committee is, or are best fitted, to carry on
the purposes of the IC-DLB