We welcome research opportunities with deep gratitude.

The expertise, curiosity, and goodwill of researchers form the bedrock of future progress and are a source of hope for families navigating the complexities of BPTF‑associated neurodevelopmental syndrome.

We are highly skilled and engaged research partners (read about our team here).

We commit – subject to capacity and alignment – to offer the expertise, capabilities, and lived experience of our leadership team and advisors to strengthen your potential research.

There are many forms this support may take across the project life‑cycle.

Identifying and prioritising the research question: BPTF Families can combine lived experience insight with the scientific and clinical expertise of our Board and Advisors to help shape research questions that are both biologically relevant and directly responsive to families’ interests.

Planning: The BPTF Families Board’s experience in health research, biotech leadership, governance, and rare disease policy enables us to contribute practical, ethically sound planning – ensuring timelines, resourcing, and engagement strategies are realistic and community centred.

Design: BPTF Families can advise on participant burden, consent, accessibility, and communication materials; the scientific and clinical expertise of our Board and Advisors adds practical input on protocol feasibility and sample requirements so designs are both rigorous and family friendly.

Conduct: Through trusted communication channels and ongoing community engagement, BPTF Families can support recruitment and retention and help anticipate practical barriers to participation (including language and cognitive accessibility needs and carer scheduling constraints), while promoting research ethics through clear, accessible informed consent and safeguarding participant welfare.

Analysis: While BPTF Families do not perform laboratory or statistical analyses, the scientific and clinical expertise of our Board and Advisors enables us to contribute contextual interpretation and help translate findings into clear, meaningful messages for families and non-scientific audiences.

Oversight and governance: BPTF Families can contribute community centred perspectives to governance, backed by Board expertise in risk oversight, research implementation, and regulatory environments, to ensure transparency, accountability, and ethical stewardship throughout the project.