List composed by the OIFE at AGM 10
Questions, Suggestions and Expectations of people with 0I towards OI research
During the 10th AGM in 2002 of the Osteogenesis Imperfecta Federation Europe in St. Jorioz / France the OIFE delegates, representing over 7000 OI-people in Europe (and supported by OI people from Australia and the USA) put together the following list of questions and issues on which they would like to get information or would appreciate research in the near future.
OIFE's president presented this list to the participants of the subsequent International Scientific Conference on OI in Annecy and asked for their help in finding answers.
The OIFE members see these matters as urgent; the OIFE is frequently confronted with this kind of questions of people with OI from all over the world.
We are aware of the fact that some answers can only be based on personal experience and not yet on a finalized scientific research program, but we would appreciate if these experiences could be shared with us as well. Together we should decide in which way we could spread this knowledge to the OI community in the world.
- Bisphosphonates
- Are there new results of recent research that we should be aware of ?
- What is known about possible long-term side effects in the treatment of OI-children?
- Are there data on pregnant OI-women who were, or still are, treated with bisphosphonates ?
Is information available on the combined application of bisphosphonates and growth hormones?
- Does bisphosphonate treatment have any influence on OI hearing loss?
- Can Bone Morphogenic Proteins (BMP) be used in OI?
- These seem to be of great potential importance for OI !
- Has any research been done on the use of BMP's on OI fractures?
- Is there any practical experience with BMP's in OI cases?
- Does anyone have literature references?
- Can they be applied to OI in general or only in specific cases?
- New scanning methods
- Could modern scanning methods, like MRI or QCT, be useful in determining bone density and bone structure?
- Has anyone experience with magnetic, electric or ultra-sound stimulation to improve the healing of fractures?
- How often do cardio vascular disorders (like valve insufficiency) occur in relation to OI?
- What are the results of treatment of scoliosis in OI?
- Who has experience with scoliosis corrections?
- Bone marrow and stem cell transplants
We would like to get an update on the status of this approach
- How common are respiratory problems in OI;
we are aware of the fact that some people need oxygen support
- What is the cause of extreme fatigue in OI?
Is it specific for type I ?
- Is high blood pressure common in OI? If so, what might be the cause?
- Is there a connection between pregnancy of women with OI and increased hearing loss?
- Is there a possibility to get approval for the use of drugs without double blind-studies?
- How common are problems with incontinence related to OI like in EDS?
- Is there data on the special medical and social problems caused by the ageing process in OI?
- Is there new information about phenotype/genotype relation?
- Are specific mutations related to special symptoms, such as hearing loss?
- Profuse Sweating
- This seems to be recognised as an OI accompanying symptom now, but
do you think that the medical community is sufficiently aware of it?
- What could be the cause?
- Can or should anything be done about it, besides personal anti odor agents.
page last updated 17 August 2003