:: Hello All
:: I think it might be useful to start gathering some
:: research figures from those in contact with the
:: OMA web site. There are a lot of questions and
:: issues being aired and it would be useful to have
:: some firm figures available.
:: I can help with the technical gathering but I need
:: help from you all to design and lead the
:: questionnaires. How about the following
:: suggestion:
:: 1. We gather a list of topics that people would like
:: to gather some research on.
:: 2. We pick a pilot one from the list.
:: 3. A team volunteers to design a questionnaire.
:: 4. We issue the questionnaire and see what data is
:: returned (I think the data should be anonymised).
:: To start off, how about some of the following topics:
:: 1. Names of conditions that you/ your children
:: have/ may have.
:: 2. Genetic questions eg. family connections,
:: siblings etc.
:: (anything else?)
:: This won't really work without your help so I would
:: welcome any comments.

Rob: Please write to me at my email address. I have some questions for you on this oma topic. Thanks