Can you help us create good registries?
Why do we need registries for OI?
Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning about what happens when people with OI get older (natural history). More knowledge can help us create standardized guidelines and provide better treatment for both children and adults with OI.
Who are working on registries for OI?
Several different stakeholders are working on developing new and coordinating existing registries for OI and rare bone disorders at the moment. The European Reference Network for Rare Bone Disorders (ERN BOND) is one of them. OIFE is helping out by gathering information and giving advice to the different stakeholders.
We need your help!
ERN BOND has created a survey to provide a picture of the current situation in Europe in regard to registries for OI and other rare bone diseases. The survey is for patients with OI and other rare bone diseases and parents of children with OI and other rare bone diseases: https://www.surveymonkey.com/r/ERN-BONDpatients
The survey will take around 10-15 minutes to fill out and the goal is to uncover what people with OI and other rare bone diseases would want to get out of providing data to a registry and/or joining a research study.
Who can provide input?
To make sure that the survey will be valuable for our advocacy work, we need as many people as possible to answer! People from all countries can provide input as long as they can read and understand English. The deadline is 19th of August 2019.
Will other languages be available?
Other language versions are being developed and will be distributed locally from different health care providers in Europe. But we encourage those of you who are able to use the English version to provide input now.
Keeping medicines safe
In order to monitor if a medicine is safe, the European Medicines Agency (EMA) is dependent on input from patients, general practitioners, hospitals, pharma companies as well as knowledge from registries. Learn more in the video below.