James Lind Alliance (JLA) Priority Setting Partnership
Help set the research agenda for rare musculoskeletal diseases in adulthood
Created to identify unanswered questions about Osteogenesis Imperfecta and other rare conditions which affect the bones in adults, the JLA is bringing together patients, carers and social care professionals in Priority Setting Partnerships (PSPs) to agree what research matters most to patients and health care professionals.
What questions do you think need answering in the area of Osteogenesis Imperfecta?
Have your say; participate in the survey and help set the priorities for research in OI: https://www.surveymonkey.co.uk/r/JZ9RDFK
LINK Clinical Trial
Brittle Bone Society would like to make you aware of The LINK Study which aims to find out what impact the investigational medication has on the participant’s bone mineral density and the frequency of fractures in children and adolescents with OSTEOGENESIS IMPERFECTA. If you would like more information see contact info below.
RUDY - The Rare UK bone, joint and blood vessel disease study - will develop detailed phenotypes of patients with rare musculoskeletal conditions to identify subgroups of patients with these conditions, and provide a platform from which collaborations with the NHS, industry and academia can be established to develop new tests and treatments.
For the study a secure web interface based database will be used to collect and store data, and as the primary mode of interaction with study participants.
"Being involved in this new study, where we have a few basic medical tests and fill in questionnaires on a database, is an exciting opportunity for all of us. Our involvement, as individuals, will potentially work towards getting better treatment for OI in the future - and how fantastic would that be?! I hope as many members as possible will take this opportunity up, as the more information provided the better the study will be." - Elaine Rush
SCOLIOSIS RESEARCH PRIORITY SETTING PARTNERSHIP - has been set up to identify unanswered questions about the diagnosis and management of scoliosis. The James Lind Alliance have been in touch with the BBS to ask if our membership would like to help them in an important study. The survey is available at https://www.surveymonkey.co.uk/r/SSJZ28R or contact the James Lind Alliance Project Manager at the Oxford Biomedical Research Centre to request a paper version (voicemail 01865 223298, e: firstname.lastname@example.org
You can find more information here
UK Clinical Trial Gateway
By clicking on this link you can find out what clinical trials are happening across the UK. Every year, more than half a million people help the NHS improve healthcare and develop life-saving treatments by taking part in clinical trials. Whether you are a patient or a healthy member of the public, there are many reasons why you might decide to take part. click here
The 100,000 Genomes Project
A UK government project is now running under the NHS called the 100,000 Genomes Project to find the genes that cause rare diseases such as Osteogenesis Imperfecta.
Who is eligible?
Currently only patients living in England with Osteogenesis Imperfecta. This particularly applies if no one in your family has had genetic testing or had a gene test but no cause was found. Only one person from each family with OI needs to join.
How do I join?
See your GP or hospital team and ask to be referred to your nearest genetics clinic running the project.
What happens when I am seen at the genetics clinic?
You will be given more information about the project and an opportunity to ask any questions. If you choose to take part you will fill in some consent forms and be asked to give a blood sample.
The results may take some time to be available but will be sent to you and your doctor.
What is the benefit of taking part?
Results may take some time but will be sent to you and your doctor and will find out the underlying cause of your OI. Results will then be used to improve and help our understanding of Osteogenesis Imperfecta for future generations.
How do I find out more?
Check out the website www.genomicsengland.co.uk and take a look at the information sheet.