Get Involved in Research
The National Osteoporosis Society encourages research projects which aim to improve the prevention, diagnosis and treatment of osteoporosis.
On this page you will find links to information on research studies currently being carried out into osteoporosis/bone health and ways that you can get involved.
Please note: Inclusion of studies on this page does not imply endorsement or approval of the project or its outcomes by the National Osteoporosis Society.
National Osteoporosis Society Research Grants Committee
Learn more about how the views of people with osteoporosis are represented as the Charity makes decisions on research strategy and fundingRead More
HELP REQUESTED FROM HEALTHCARE PROFESSIONALS
James Lind Alliance Priority Setting Partnership in Rare Musculoskeletal Diseases in Adulthood
The James Lind Alliance (JLA) Rare Musculoskeletal Diseases in Adulthood Priority Setting Partnership (PSP) brings together patients, carers and Healthcare Professionals to identify important unknowns in the diagnosis, treatment, management and care delivery for adults with rare musculoskeletal diseases.
The disorders to be addressed comprise Fibrous Dysplasia/ McCune Albright Syndrome, Osteogenesis Imperfecta and X-Linked Hypophosphataemia.
This will ultimately generate a top 10 list of questions that adults with rare musculoskeletal diseases, their carers and Healthcare Professionals want researchers to address. The top 10 will then be promoted to funders of research such as the National Institute of Health Research (NIHR).
An online survey has been launched to gather questions from adults with rare musculoskeletal diseases, their carers and Healthcare Professionals. The responses will then be analysed and checked against existing evidence. Once a long list of questions has been identified, a process of prioritisation will begin and the top 10 will be identified.
The research team would like to invite Healthcare Professionals who see patients with these rare skeletal diseases to complete the survey.
It is anticipated that the survey will close at the end of June. If you would like to find out more about this exciting project, please visit: http://www.ouh.nhs.uk/research/patients/priority-setting-partnerships/musculoskeletal-rare-diseases/default.aspx.
RESEARCH PROJECT TESTING NEW TREATMENT
MIDOs (Minimally Invasive Delivery of Osteospheres for Treatment of Osteoporosis)
An exciting new research project to improve the lives of people with osteoporosis is currently underway. The project focuses on repairing and growing new bone in areas where the bone has become very thin, by using injectable biodegradable materials combined with the patients’ own bone marrow cells (stem cells).
The research is at a very early stage and is currently developing the technology to make this treatment possible. However, given the potential of this technology to bring about significant benefit to patients, the research team is very keen to understand what people think about this potential treatment. We are therefore inviting people to complete a short questionnaire which should only take about 20 minutes to complete. You do not need to have osteoporosis in order to complete the questionnaire.
The project, called MIDOs ‘Minimally Invasive Delivery of Osteospheres for Treatment of Osteoporosis’, is a collaboration between the Universities of Nottingham, Leeds and Birmingham and their associated NHS teaching hospitals. The University of Birmingham has compiled this questionnaire. If you would like to know more about this exciting new project, please visit: http://midosproject.co.uk/.
If you have any queries please contact Hilary Brown - email@example.com (07917 065741) or if you would like a hard copy of the questionnaire to complete, please contact Evelina Balandyte – firstname.lastname@example.org (0121 414 7054).
The Rare UK Bone, Joint and Blood Vessel Study (RUDY)
The study funded by a partnership between the NIHR Rare Diseases Translational Research Collaboration and the Oxford NIHR Musculoskeletal Biomedical Research Unit, University of Oxford, is striving to improve understanding of all aspects of rare bone, joint and blood vessel diseases with the aim of developing new tests and treatments to improve patients' lives.
The first step in doing this is to gather information in order to describe in more detail the different types of rare diseases and what it is like to live with them. The RUDY Study is open to those with rare disorders, including those affected by rare types of osteoporosis (e.g. pregnancy associated osteoporosis or idiopathic juvenile osteoporosis), and participation is designed to be as simple and flexible as possible. The researchers intend to use questionnaires over a period of five years. You can decide what parts of the study you want to be a part of, and how you would like to be contacted: whether by letter, telephone, email or text. You will also be free to change your mind about your participation and your preferences at any time during the study.
Health Technology Assessment (HTA) Prioritisation Panels
These are key roles which ensure that the public are actively involved in discussions and decisions on the prioritisation of NIHR health research. As a patient/public panel member you will help to identify and raise issues from the perspective of patients and the public that are relevant to the research.
The HTA Programme produces independent research about the effectiveness of different healthcare treatments and tests for those who use, manage and provide care in the NHS. It identifies the most important questions that the NHS needs the answers to by consulting widely with these groups, and commissions the research it thinks is most important through different funding routes.
If you feel that you could help the HTA programme by sharing your knowledge and experiences by becoming a Patient/Public member of one of the HTA Panels, then please visit the NETSCC website where you can find out more, including the information pack and how to apply.
If you have any queries please contact the NETSCC PPI team at email@example.com or 02380 599302.
National Institute for Health Research (NIHR) Public Reviewer
The National Institute for Health Research (NIHR) needs people with everyday experience of osteoporosis as a patient or carer to comment on research proposals. As a public reviewer for the NIHR, Evaluation, Trials and Studies (NETS) programmes, you could be invited to look at a research proposal or commissioning brief related to your own area of experience and answer some key questions to inform the board or panel. Each review is a stand-alone task, which is sent to you to do in your own time, to an agreed deadline.
The NIHR funds health research that produces evidence for professionals, policy makers and patients, so they can make informed decisions. And we know that research that reflects the needs and views of the public is more likely to produce results that can be used to improve health and social care.
To express an interest in being a public reviewer for research proposals please email us firstname.lastname@example.org or call a member of our team on 02380 599302. To find out more: Visit www.nets.nihr.ac.uk/ppi