Conflicts of Interest Policy and Register

Last Updated: 16 October 2026

1. Purpose and Scope (Criteria 1.4)

This policy sets out how Bruck Syndrome (the 'Charity', Registered Charity No. 1216729) identifies, declares, records, and manages conflicts of interest and conflicts of loyalty across all governance, research, and health and care information production activities. It operates in conjunction with Clauses 6, 7, and 21 of the CIO Constitution (Amended 30/01/2026), our Operational Strategy (v1.1), and our Health and Care Information Production Process Policy (v1.0). This policy applies to all Charity Trustees, members of the Scientific Advisory Committee (SAC), external clinical peer reviewers, staff, and volunteers involved in creating or signing off health information.

2. Definition of Conflicts of Interest

A conflict of interest arises whenever an individual's personal, professional, commercial, or family interests could—or could be perceived to—compromise their duty to act solely in the best interests of the Charity and its beneficiaries:

1. Direct Financial Interests: Direct payment, shareholding, consultancy fees, or commercial ties with a supplier, equipment provider, or pharmaceutical/biotech company.

2. Indirect Financial / Connected Person Interests: Financial or material benefits accruing to a spouse, partner, sibling, parent, child, or business associate (as defined in Clause 21 of the CIO Constitution).

3. Non-Financial or Professional Conflicts: Academic competition, personal clinical advocacy for a single proprietary treatment, or institutional rivalry that could bias the balanced presentation of health information or research grant peer review.

4. Conflicts of Loyalty: Duties owed to another charity, employer, corporate entity, or family member on the Board that could influence independent judgment.

3. Identifying and Recording Conflicts in Health Information Production

Annual & Onboarding Declarations: All Trustees, SAC members, and core volunteers complete a Conflict of Interest Declaration upon appointment and annually thereafter, recorded in the Central Conflicts of Interest Register (Section 6).

Resource-Specific Declarations: Before reviewing, writing, or signing off any health information resource, every clinical expert, SAC reviewer, and writer must declare any topic-specific conflict (e.g., pharmaceutical advisory board membership or trial sponsorship) on the Resource Sign-Off Form.

4. Action Taken to Manage Declared Conflicts

In accordance with Clause 7 of the CIO Constitution, whenever a conflict is identified:

1. Disclosure: The nature and extent of the interest is recorded in the Central Register and on the relevant Resource Sign-Off Form or Board Minute.

2. Recusal from Decision-Making: A conflicted Trustee or reviewer must absent themselves from discussions, must not vote or be counted in the quorum on that matter, and cannot act as the Final Approver for a resource where they hold a conflict.

3. Independent Clinical Balance: If a specialist clinical reviewer has received research funding or speaking fees from a manufacturer of a therapy mentioned in a resource, an independent second SAC clinician with no commercial ties conducts a secondary review to verify that all treatment risks, benefits, and alternatives are presented neutrally.

4. Managing Trustee Family Connections: Where Trustees are related ('connected persons'), financial authorisations require unconnected signatories where applicable, and editorial sign-off incorporates independent Trustee oversight (Mrs Hadis Sharifian) and independent Scientific Advisory Committee (SAC) clinical approval.

5. Advertising, Sponsorship & ABPI Code of Practice Compliance

Editorial Independence: Bruck Syndrome maintains 100% editorial control over all health and care information. Commercial sponsors, donors, or pharmaceutical partners are never permitted to dictate, edit, or approve the clinical content of patient/family information resources.

ABPI Code of Practice: Whenever the Charity works in partnership with, or accepts an educational grant from, a pharmaceutical or life-sciences company, both parties must strictly adhere to the Association of the British Pharmaceutical Industry (ABPI) Code of Practice and the ABPI Working Together Handbook for Industry and Patient Organisation Partnerships (2025).

Transparency to Users: Any external funding, grant support, or corporate sponsorship for an information resource must be clearly and prominently stated on the published resource (e.g., 'Funded by an independent grant from [Funder Name]; the funder had no input into the content of this resource.'). In line with UK law, no resource may promote a prescription-only medicine (POM) to the public.