by Margaret | 30 Jul 2019 | Research and Surveys
The EU website for the Pelle-926-301 study is now live. You can see it at www.global.gorlinstudy.com Study sites in France, Spain and Germany are now active. Clicking on the respective flag will launch the content in that language. It is anticipated that other sites...
by Margaret | 5 Jul 2019 | Research and Surveys
An on-line survey ran from 29/7/18 to 4/7/18. Participants could volunteer if they were 18 or over and had Gorlin syndrome. We asked participants to respond for themselves. There were 39 responses, including one form an individual who said she was not diagnosed with...
by Margaret | 17 Jun 2019 | Research and Surveys
Germline Genome Editing (Genetic Editing) is a technique through which parts of DNA in an egg, sperm or embryo can be added, removed or replaced. It can be used to prevent hereditary diseases by ensuring DNA sequences known to cause specific conditions are not passed...
by Margaret | 2 Apr 2019 | Research and Surveys
What is screening? Screening in the process used to see who is suitable to participate in a clinical trial. Screening uses a checklist of inclusion and exclusion criteria. You can read more about these here. The criteria aim to do several things If you go for...
by Margaret | 18 Dec 2018 | Research and Surveys
Why do clinical trials? Over the past couple of years, clinical trials are coming on line for people with Gorlin Syndrome. Clinical trials are usually used to test new treatments (for example, patidegib) or older treatments that are being tried for the first time in...
by Margaret | 30 Jun 2018 | Research and Surveys
In recent weeks we have been discussion with LEO Pharma regarding the development of a new medication. The purpose of the survey is to find out how individuals would feel about a medication which could prevent basal cell cancers. The proposed medication is in the...
