How to fill the knowledge gaps in OI
On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI.
The talk tried to explain how people with OI and parents of children with OI can contribute in different ways to filling some of the many knowledge gaps in OI:
- By taking part in natural history studies
- By taking part in clinical trials in OI
- By answering national and international surveys, like the IMPACT survey and similar
- By signing up for registries like the contact registry in the US and the RUDY study in the UK
- By contributing with patient reported data (PROMS) when visiting OI-clinics
Without the input from the patient community the clinicians and OI-organizations, will keep struggling to answer the majority of questions from patients and members. We are aware that survey fatigue is a real problem, and we need to deal with it. Unfortunately surveys are one of our main ways to wisdom, so we have to find ways to make them less annoying and better explain how answering these will benefit each and everyone in the long run.
You can see the talk in the video below, where you can also find the other talks from the conference.