Status:  June 17,  2016

Prof. Dr. Arnold Oranje ((pediatric) dermatologist), Dr. Sherief Janmohamed (dermatologist in training at University Hospital Brussels, Belgium) and Lex van der Heijden had a meeting to determine the next steps to be taken in the genetic research. First applications to the Medical Ethics Review Committee (METC) have to be submitted and approved before it is allowed to take biopsies. A total of 10 biopsies are needed. The plan is that in early October the biopsies can be taken and on two locations: Brussels (Belgium) and Alkmaar (Netherlands). For a biopsy in Alkmaar, a referral is needed from a physician, who refers the patient to a consultation by Prof. Dr. Oranje. Once all biopsies have been taken, they will be sent to Canada for the actual genetic research.

For those who would like to participate, it is important to know that the patient should have classic CMTC. For more information: This email address is being protected from spambots. You need JavaScript enabled to view it.

Status: March 20,  2016

When biopsies are conducted within the framework of a genetic research program, it is required by law in the Netherlands that the Medical Ethics Review Committee (METC) agree. This is, however, a limited time offer and has expired. This means that a new application must be submitted. Prof. dr. Oranje and Dr. Sherief Janmohamed will take care of additional biopsies after approval by the ethics committee.

Status: December 26, 2015

Currently, three patients with classic CMTC ceded a biopsy. One biopsy is in Canada. Two biopsies in the biobank are in the academic Hospital Maastricht. Two other patients have been identified, of which at least one patient wants to cooperate. The end of January 2016 has Lex van der Heijden working with the academic Hospital Maastricht, and one of the agenda items is taking even more biopsies. The research may finally begin!