For many rare diseases like OB, clinical registers are the only way that research can be carried out. This is because patients are spread out throughout the country, doctors do not see enough patients to carry out research and research needs to be carried out over a long period of time before useful results emerge. Holding a registry means that there is large amount of information about patients with the same condition. We understand that your child has been diagnosed with Obliterative Bronchiolitis (OB). It would be very helpful to know how many people have Obliterative Bronchiolitis in the UK. This would enable a registry of the disease to be compiled.
We have been working with BPOLD to try and ensure that as many OB sufferers as possible are entered on the register. We felt that parents were the best motivators to ensure the register is populated. BPOLD have now provided downloadable forms for parent consent forms.
You can simply go to : http://www.bpold.co.uk/condition.php
Click the link for OB
Download and complete the forms
If you prefer we can post the forms out to you just email: email@example.com Please make sure your child is included. We understand Doctors are very busy people and may have forgotten to register your child on the BPOLD register. Next time you visit your Consultant please take the consent form with you to give to them. Explain how important this is to you….and just to make sure they remember please ask again at the following visit!!!