Research and Surveys
The Gorlin Syndrome Group is committed to the promotion of research into the causes, effects, treatment and management of Gorlin Syndrome and the dissemination of the useful results.
On occasions we are contacted by organisations and medical practitioners wishing to carry out research on the various aspects of the condition, not all are appropriate, others are and it is with this in mind that a decision is made as to appropriateness of the study / research and the benefit to patients.
All reqests to carry out research are guided by the Gorlin Syndrome Research Principles and Process Guidelines.
Full information about each area of study or research will be available, along with the details of the ways that data will be collected, i.e. on-line, focus groups or direct contact with medical practitioners.
Patient confidentiality is important to us and we need to assure people that the information given goes direct to the organisation and practitioners involved and not to the support group.
It is worth bearing in mind that these types of studies and research are carried out over lengthy periods of time and it is not until all the informtion is collated, and in some cases, published to medical journals etc that results will be readily available. It is at this stage we would hope to offer feedback on results of patient involvement and our intention is to publish these within this area of the website.
Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello. We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support.
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361