“ Dear members,
We would like to tell you about a project elaborated with the team from Necker Hospital working on IP which we feel is of major importance. Our disease has been  classified so far as a ‘dermatological disease’ but we all know that its most debilitating effects are often neurological. The Necker team is well aware of that fact and wishes to conduct a ‘neurological study’ of IP.”

Christine Bodomer has set up a team a clinical researchers on IP made up of a neurologist, a neuro-radiologist, an ophthalmologist, a stomatologist and a dermatologist. They wish to better document the natural history of IP (symptoms and clinical course) in close coordination with the teams of physicians in charge of the people with IP.
At this stage, all is meant is to conduct a clinical study and no quick spin-offs can be expected from it, but new treatments might be expected sooner or later, especially as concerns fits of convulsions.
To conduct that study the Necker team wishes to read the patients’ files and then see the patients themselves so as to get their answers to a pre-established set of questions on their experience of IP, in order to be able to make enlightening comparisons. We are fully aware you may find these two steps a bit difficult to manage and the practical procedure we have thought up may be modified to better fit into everyone’s schedules.

• Véronique Douillet,who is a member of the board of directors,  would make the link between you and the hospital concerning the files and schedule. She would be sent the files by post and she would hand them over to Christine Bodomer for a preset period of time.
• Christine Bodomer promises to contact the physicians treating the patients so they don’t feel deprived  and are willing to collaborate.
• The children will be examined by five specialists from the team, in one day if possible but more likely over two days. The date will probably be March. Travel expenses should be paid by the hospital and accommodation expenses by the association.

The team of researchers would like to examine ten patients or so to start with.
We would very much like to know if you are interested in (taking part in) this project before we take any further steps and then we will try to manage things as smoothly as possible for each and everyone.
We are looking forward to some quick positive answers.
If you are ready to take part, please contact Véronique by e-mail using the contact module on our site:
Contact Etude Neurologique