MRF is a UK-based charity registered with the Charity Commission of England. MRF is constituted as a non-for-profit governed by a Board of Trustees, who are directors of the company. MRF offices reside in Bristol, Edinburgh, Belfast and a linked organisation in Dublin, Ireland.
MRF was founded by parents and other family members of people affected by meningitis who wanted to combat the disease by funding research, and to educate and raise awareness of the disease to improve outcomes. MRF remains a membership based organisation and represent approximately 17,000 families affected by meningitis, mainly in the UK.
MRF is an international research funder, supporting research to improve the prevention, detection and treatment of meningitis. Our research focuses on vaccine development and implementation both in the UK, and internationally as well as improvements in diagnosis and treatment. We work to maximise the immediate practical and clinical benefit from the research we fund, and seek opportunities to disseminate learning from research through developing educational material to the public and health professionals, engaging the public with our research through a programme of discovery days, and helping individuals and families to benefit directly from our research and clinical networks through annual Pushing the Boundaries days for members with meningitis sequelae. We also run professional conferences and workshops for scientists and clinicians.
MRF is a leading advocate for vaccination and improved health care. In partnership with experts, we also contribute to the development of national health standards, training and guidelines for health workers in the UK.
Alongside research funding, MRF have a significant public facing role. MRF provides practical and emotional support to families affected by meningitis, as well as engaging in targeted awareness raising activities, providing evidence based symptoms information to members of the public, and campaigning for research-informed improvements to public health policy.
Role in the project
MRF Team Leader for Work Package 1 Explore the patient perspective and involvement relating to informed consent for vaccine trials (childhood meningitis, cervical cancer, RSV vaccination in pregnancy).
To work on the task that will explore the patient perspective and involvement in vaccine research, aiming to identify existing issues and particular challenges relating to informed consent for vaccine trials in the three proposed areas (childhood meningitis, cervical cancer, RSV vaccination in pregnancy) applying a gender perspective. MRF will draw from latest relevant national and international guidelines and policies.
This may include:
– Questions about children’s assent/parental proxy consent and the ages at which they apply and format
– Comprehension of patient information for informed consent desirability of interactive/quiz based consent processes to test comprehension
– Fairness in regard to compensation/inducement for participation (acceptability of compensation for adolescent vs adult)
– Patient expectations from research: personal therapeutic gain
– Feedback of research results to participants
The issue of participation in clinical trials and translational research will also be explored for patients, identifying best practices and strategies implemented at national or international level.
To this end, a number of patient associations (between 6-10) from at least three countries across Europe, will be actively involved by taking part in a one-day workshop, in order to gather feedback and perspectives from patient group representatives, on issues identified within the scope of the task. The overall aim will be to reach consensus on priority of issues in terms of their importance and difficulty, and further explore potential solutions to identified challenges. Patient organisations may include meningitis patient groups, patient groups dedicated to healthy childhood, parenting, healthy pregnancy, infections in pregnancy, health issues in adolescence, cervical cancer.
Mrs. Linda Glennie
Mrs. Linda Glennie is the Head of Research, Evidence and Policy at MRF.
She has day to day contact with many individuals affected by meningitis and has developed close links with health professionals and scientists working in this field. She is responsible for managing the Foundation’s research programme, developing educational resources for the public and health professionals, and organising the scientific programme for MRF’s international conferences, regional symposia, and public engagement events. She is responsible for the charity’s patient stakeholder relationships with medical, scientific and statutory bodies.
Phone: (+44) 3334056270
DR. ROSANNA RUSSELL
Project Manager i-CONSENT
DR. LIZ RODGERS