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.

James Lind Alliance (JLA) Priority Setting Partnership

This study is now closed you can read the final report here.

The next step will be to issue a shortlist of questions in another survey asking which you think are the most important. More information about this will be available shortly.

The final stage of the project will be a workshop at the Friends House, 173-177 Euston Rd, Kings Cross, London NW1 2BJ on Monday 18 June 2018.  The workshop will take place from 10am until 4pm and will include approximately 40 people, made up of patients and carers, as well as health professionals. It will be run by independent facilitators who will make sure that everyone has an equal chance to put their thoughts across.

If you are interested in taking part in this workshop please email for more information.

The Study

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 healthcare professionals.

What questions do you think need answering in the area of Osteogenesis Imperfecta?

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 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/