welcome

Would you be interested in a trial about improving quality of life, strength and bones in OI in children?

The OI community previously helped enormously with a project for new medicines for adults with OI and we are very grateful for your input. We really need your help again, and hope you will consider getting involved.

Professor Nick Bishop is looking to recruit children aged 8-16 to take part in a study using a medicine already used in the NHS to treat high blood pressure in both children and adults. This medicine is called “losartan”. 

The study will be in Sheffield, Liverpool and Bristol, but children (and parents) would need to travel to Sheffield to have a special high resolution bone scan (HRpQCT) at the beginning and the end of their time in the study. The study would pay for travel and hotel costs for child and one parent to come to Sheffield (x2) and for travel costs for each local visit (x3).   

Overall the study lasts 6 months; you would have to travel to Sheffield and probably stay overnight in a hotel twice; have 5 lots of blood tests altogether (3 in the local centre); 3 questionnaires about how you feel; test grip strength 3 times; and have 2 special bone scans. As usual, we would use a numbing cream or spray for blood tests.

The level of interest in doing this work will help us a great deal in deciding what to do next. We also would REALLY like to know if the number of visits and tests sounds ok- or NOT – and if not, what would be ok? Are you put off by the travel issues? 

Please let us know!!!

If you would like to be involved in this please contact BBS – admin@brittlebone.org and we will get back to you asap.