Introducing the RESTORE Patient and Public Involvement (PPI) Group

We are pleased to introduce the RESTORE Patient and Public Involvement (PPI) group, who recently reviewed and provided detailed feedback on our forthcoming clinical trial protocol. Their input has played an important role in refining the study design to ensure it is clear, relevant, and aligned with the needs and priorities of people affected by multiple sclerosis (MS).

Patient and Public Involvement is a core part of modern clinical research. It ensures that research is not only scientifically robust, but also meaningfully informed by the experiences of those who are most affected. By involving members of the public at an early stage, studies can be improved in areas such as participant experience, accessibility of information, ethical considerations, and overall study relevance.

The RESTORE PPI group brought together a diverse range of perspectives, drawing on lived experience of MS and its wider impact. Their review of the protocol provided constructive feedback on study materials, participant-facing documents, and key elements of the trial design. This input is helping to ensure the study is practical, understandable, and considerate of participant needs.

We would like to extend our sincere thanks to the members of the RESTORE PPI group for their time, thoughtfulness, and commitment throughout this process:

Their contribution is already shaping the direction of the RESTORE study and strengthening its focus on real-world relevance for the MS community. We are grateful for their continued involvement as the project progresses.

#MSResearch #PPI #ClinicalResearch #RESTORE

🧡 Dominic Shadbolt

Dominic is the chair of the RESTORE PPI group and is an expert patient consultant who has had MS for 34 years, bringing strategic patient insight to research, trial design, and health innovation. He supports MS research initiatives including RESTORE/CLOSER, helping ensure that studies remain practical, relevant, and focused on what matters most to people living with MS.

🧡 Simonida Rajcevic

Simonida is an artist and professor, she was born in Belgrade on April 2nd, 1974. She graduated from the Faculty of Fine Arts in Belgrade in 1997 and in 1999 she received her Post Graduate Degree. In 2015 she finished her Doctor of Fine Arts degree, DFA, at the Faculty of Fine Arts in Belgrade. She obtained a DAAD stipend to do first year post-graduate studies in Berlin, Germany. Since 2000, she has herself been working as full time professor at the Faculty of Fine Arts in Belgrade. 

She felt the first symptoms of MS in 2020, was incorrectly diagnosed in 2021 with PPMS, and stopped walking in 2024. She went to NIH and was diagnosed with SPMS with spinal cord atrophy.

🧡 Omar Al Nokhatha

Omar is a Research and Advocacy Coordinator at the National Multiple Sclerosis Society. Diagnosed with multiple sclerosis in 2014, he has spent a decade working across diverse sectors, including the oil industry, entrepreneurship, and F&B, before pursuing his true passion of psychology. Holding a Master’s in Psychology recognized by the British Psychological Society, Omar combines his professional background and lived experience with MS to advance awareness, research, and inclusive support for people living with the condition. He aspires to contribute meaningfully to shaping the UAE’s MS landscape, ensuring that the voices and experiences of people with MS are heard and represented.

🧡 Anjali Vyas

Anjali is a disability rights advocate from India and a person living with Multiple Sclerosis. She is the Co-Founder of Believe in the Invisible, an organisation focused on advancing awareness and inclusion for people with invisible disabilities through storytelling. She has served on patient advisory boards at many pharmaceutical companies contributing lived-experience insights to healthcare and research discussions.