Great Ormond Street Hospital are conducting research on the use of artificial intelligence for imaging children’s bones on X-ray tests. In particular, knowing whether artificial intelligence can help accurately find broken bones on X-rays. They are conducting a survey of the public (parents, carers and children) to find out how they feel about hospitals using these powerful computer programmes to look at their imaging scans to spot broken bones in children.

You can read the Fracture Study Survey Poster here.  

There is also a website with more details available at www.fracturestudy.com which includes a short animation video of the survey.

The Survey

If anyone is interested in filling out the short online survey then please follow the links below.

Children & Young Adults Survey Version

Parent & Carers Survey Version

One of the themes the OI community asked us to provide more information and resources on is Independent Living.

Due to this being such a wide area covering topics from leaving home, starting a career, adapted housing, social care, benefits, travel, to finding a PA etc we developed a working group of individuals with OI to initially discuss and determine what areas we should cover as priority.

The Brittle Bone Society recognised the lack of research available around the needs for adults with OI to live independently and therefore as part of this project created a survey, which was carried out in March and April 2021.  The resulted looked at identifying the main gaps in support services for adults living in the UK and Ireland and  also assessed what resources the BBS could develop to assist individuals to live more independently.

Thanks to the Centre for Rare Conditions in Glasgow for analysing the results.

The full report can be viewed here: Independent Living Survey Report .

The Appendix to the report can be viewed here: Appendix to Report.

Below are some highlights from the responses.

The Independent Living Working Group along with Occupational Therapists have worked towards pulling useful information together. These resources  can be found here.

The care for adults with OI is fragmented, and most do not receive the quality of care they need. To address this, NHS England is developing a specification for expert rare bone disease centres. A Central concept is that better coordinated care leads to better outcomes for people with rare diseases, their family and the wider NHS.  It is therefore crucial for the NHS to understand the healthcare services used by people with OI and their costs.  This research application directly addresses these questions by describing how adults with OI use NHS services in hospitals as well as in the community.  This information will be useful for people with OI, their families, clinicians and policymakers.

NHS Costs

The results for the first part of this study have been published.  You can read the paper here

Impact on Employment

The researchers are now looking into the impact of Osteogenesis Imperfecta on productivity, employment and unemployment.

They have analysed the first 30 responses and have potentially extremely useful results. To be impactful, we now need as many adults with OI, whether you are working, not working or retired to consider helping with this research

We ask all OI adults to consider joining this online study and completing the awkwardly named form VOLP (Valuation of Lost Productivity).

You can read more about the survey and consider joining www.rudystudy.org and clicking on the orange “Find out more” button. If you are happy to join, click on the green “Join us now” button.

After you have given consent, you will find a list of questionnaires to complete on your secure ‘To do’ page under ‘Please complete these first’ Health surveys. If you have already completed this questionnaire, completing the follow-up questionnaires at six months would be really helpful. If you have any questions about joining or about the study, do email us at rudy@ndorms.ox.ac.uk.

All the results will be anonymised and grouped together so no one will be identifiable. The findings will be sent to the BBS and a summary of the key messages will be put in your secure RUDY profile page so that you can see the value of your contribution to the study.

If you want to take part, please try to complete the questionnaires by the end of March 2022, so your inputs can be included.

Description of desired participants for study:

** This study is now closed to recruitment **

Adolescents aged 12-17 diagnosed with Osteogenesis Imperfecta (OI) or Brittle Bone Disease and their parent/caregiver/carer.

Study invitation for Brittle Bone Society to share with patients/caregivers:

Clinical Outcomes Solutions, a health research consultancy, is conducting research into Brittle Bone Disease/OI on behalf of our sponsor, Mereo Biopharma, a pharmaceutical company that is studying OI. The purpose of this research is to better understand, from children and caregivers of children with OI, what their current experience of OI is and how the disease impacts their lives.

Participants aged 12-17 and their parent/caregiver/carer will be invited to take part in a 60-minute telephone interview. The adolescents and caregiver will be interviewed separately.

This research is confidential. Any contact information you provide will only be used for the purposes of scheduling the interview if you take part. To see if you are eligible to participate, or to find out more about this study, please contact Trina Soileau at trina.soileau@clinoutsolutions.com or call 07853 652276.

Posted on Aug 26, 2020
 
This Study is currently closed
 

Research Opportunity

 
Professor Nick Bishop, Trustee at the Brittle Bone Society, is seeking help in planning a new study led by Sheffield Children’s Hospital and Sheffield University for children and young people with OI using a medicine called Losartan that is already used to treat high blood pressure and kidney problems.
 

How Can You Help Now?

 
Initially that help would be through online meetings to help design the study. The study group are looking for young people, aged 12-18, and adults to contribute at this stage; about 16-20 folk altogether.

What might be involved later?

 
The study will involve people with OI all the way from start to finish, making sure it runs well and helping to explain the results when they are available.
 

How Do You Get Involved?

 
Please contact the dedicated email address for the study: OI_losartan_study@sheffield.ac.uk if you are at all interested in this project.

Posted on Oct 13, 2020

Investigating the transition from paediatric to adult services and the management of ongoing care of adults with Osteogenesis Imperfecta.

This study is now closed

Invitation to participate

My name is Chloe Morgan, I am conducting a PhD study at Swansea University which explores the transition of people with Osteogenesis Imperfecta from paediatric to adult health care services and the management of their care as adults. I am interested in this topic as I have Osteogenesis Imperfecta myself.

Update: 17 Jan 2023

Following on from the focus groups and the questionnaire, Chloe has developed a pocket guide for adults with osteogenesis imperfecta.

This booklet can be downloaded via this link: Osteogenesis Imperfecta: The pocket guide for adults living with OI (figshare.com)

Update: 18 May 2021

I am looking for individuals with Osteogenesis Imperfecta to complete an online questionnaire on the transition from paediatric to adult healthcare services and the management of their ongoing care as adults in the UK.  All participants have to be over 21 and have to have been through the transition to adult services themselves.

This research has been approved by the Research Ethics committee, College of Human and Health Sciences, Swansea University.

The questionnaire should take no more than forty-five minutes to complete. Through the questionnaire, I am seeking to capture your experience of, and perspectives on, aspects of the transition to adult services and the management of Osteogenesis imperfecta that you have experienced.

Your participation will be a valuable addition to my project as little is currently known about the experiences of people with Osteogenesis imperfecta in transition to adult services, and I would appreciate your willingness to consider completing the questionnaire. After analysing  the data, the intention is to develop a guide for people with Osteogenesis imperfecta to help navigate the transition from paediatric to adult health care services.

You can complete the questionnaire via this link;

https://swanseachhs.eu.qualtrics.com/jfe/form/SV_2gEfxkeKPGn7NY2

Please take some time to read the ‘Participant Information Sheet’ included at the beginning of the questionnaire prior to completing the questionnaire. The information sheet will offer you some further information about the research.

If you would like some more information about the questionnaire and the purpose of the research, please contact me as per below.

THIS PHASE IS NOW COMPLETE

I am looking for individuals with Osteogenesis Imperfecta to take part in online focus groups to discuss experiences and viewpoints on the transition from paediatric to adult healthcare services and the management of their ongoing care as adults in the UK. This research has been approved by the Research Ethics committee, College of Human and Health Sciences, Swansea University.

The focus group is informal with approximately 6-8 other participants and will be conducted online. I am simply trying to capture your experience of, and perspectives on, any aspects of the transition to adult services and the management of Osteogenesis Imperfecta that you are familiar with or have direct experience of.

Your participation will be a valuable addition to my project, and I would appreciate your willingness to consider taking part in a focus group.
Please take some time to read the ‘Participant Information Sheet’ available here

Posted on May 10, 2021
 
The DoMore Study is finding new ways to help children and young people with physical disabilities to move more.
 
They are looking for the following groups of people to take part in designing a new technology-based programme:
 
Young people who use a wheelchair (aged 12-25) and are unable to walk,
 
Family members of children and young people of any age who use a wheelchair,
 
Professionals from health and education.
 
There are no face to face meetings and you can take part online at a convenient time for you.
 
To find out more go to their website
 
They also have a facebook page that includes their accessible public engagement video: https://www.facebook.com/watch/?v=2534276243363793 

Posted on Jun 22, 2021
 
Have an IMPACT on the future of OI research, treatment & care
 
The IMPACT Survey is an international research project aimed at capturing and quantifying the real impact OI has on the lives of people with OI and their families.
 
Results will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI.
 
The IMPACT Survey is for people with OI and parents/caregivers of children with OI.
 
Launching end of June 2021 and running until 30th September 2021. 
 
To find out more and to complete the Survey see here:  https://www.impactsurveyoi.com/

Rudy Study

Rudy is a study in rare diseases of the bones, joints and blood vessels. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient-driven research.

For the study, a secure web-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

Visit the Rudy Study website, and visit their Facebook and Twitter pages.

THIS SURVEY IS NOW CLOSED

Dental concerns are common in individuals living with OI, and up to 50%, depending on type, are thought to have Dentinogenesis Imperfecta (DI).

There is limited evidence regarding the standard of care individuals in the UK receive.  To investigate current issues and care experiences from the perspective of those living with OI, the Brittle Bone Society (BBS) distributed a survey in the UK and Ireland. The survey was created in conjunction with the Medical and Scientific Advisory Boards and individuals with the condition. It was distributed via the BBS social media platforms during Feb 2023.

The survey explores 3 main themes looking at dental problems,  dental concerns and accessing care both in the community and within dental hospitals.

You can view the key findings of the dental survey on our below info-graphic: