CF-CTN Germany is the short form of Cystic Fibrosis Clinical Trial Network. The biggest and most experienced cystic fibrosis sites cooperate in this network to conduct multicenter clinical trials in the field of cystic fibrosis for the development of new drugs. Usually, pharmaceutical companies initiate such clinical trials. However, the network is also putting patients’ and physicians’ ideas into action by conducting own trial ideas.
More than 3,000 patients are reached by the network
Today, the network has a coverage range of more than 3,000 patients. Additional patients can be addressed via certified care centers that are not directly involved in clinical trials. As of January 2018, the trial network has 22 member institutes and 10 partner institutes while it is constantly extended by additional high-quality sites. The member institutes choose delegates to represent them in 3 committees: the executive committee (Dr. Axel Kempa, Dr. Große-Onnebrink, Dr. Stehling), the budget committee and the protocol review committee.
Without patients participating in clinical trials neither new drugs nor any advances in medicine would be possible. One advantage of participating in clinical trials is early access to innovative therapies. On the other hand, there are risks due to the lack of knowledge regarding the new drugs compared to already approved drugs. Therefore, side effects are possible or the new drug could be not as effective as anticipated. Furthermore, any study participant has to face a lot of additional diagnostics and there is additional time needed. On the other hand, this also reflects a more intensive care which can be beneficial independent of the effectiveness of the medication. It is important to stress that every study participant has the right to withdraw his or her consent to the study participation at any time. Participating in a study is always on a voluntary basis and there must not be any negative impact arising from declining study participation. Patient rights are very strictly regulated by laws and directives. For CF-CTN this is not enough! All studies conducted in the network are reviewed by an independent committee with patient representatives giving active input. Ask your doctor or study team at a CTN-site for more information!
One contact partner – many possibilities
The Mukoviszidose Institut gGmbH is the central point of contact for the network to simplify communication and budget negotiations for network institutes. For studies with complicated inclusion/ exclusion criteria, MI can find solutions using the patient registry.