Finnish DMD and SMA patient registry goes live
Another country in the TREAT-NMD patient registries initiative came online in November 2008 as the Finnish SMA and DMD Patient Registry was officially launched and patient registration began. The Registry is owned and maintained by the patient organization Lihastautiliitto ry (The Finnish Neuromuscular Disorders Association) in association with TREAT-NMD and is situated in the city of Turku in south-west Finland. All five university hospitals of Finland have participated in setting up this registry, the curators of which are Sinikka Loukamaa, nurse and diagnosis advisor, working at Lihastautiliitto, and Jaana Lähdetie, child neurologist, M.D., Ph.D., working at Turku University Central Hospital.
Patients have access to the informed consent and registration forms via the internet either through the TREAT-NMD website at https://www.treat-nmd.eu/patients/patient-registries/fi-dmdsma or directly from the Finnish patient organization website at http://www.lihastautiliitto.fi/index.php?mid=252 or by telephone (int-358-2-2739730). The registry can provide information and forms to both Finnish and Swedish-speaking patients in Finland. The forms can be emailed and subsequently printed out by the patient or sent to his or her home address by mail. The signed forms should be mailed back to Lihastautiliitto where the data will be stored securely and filtered to be further transferred anonymously to the international TREAT-NMD Patient Registry.
Finnish doctors and nurses involved in the care of neuromuscular patients will be informed about the registry and registry flyers will be distributed to various hospitals in Finland in 2009. The voluntary basis of registration is stressed by collecting the registry data from patients themselves. If they give their permission, the curators will contact genetic laboratories to enquire details about genetic testing and/or muscle biopsies.
Patient registries are a key element of TREAT-NMD’s work to accelerate clinical trials. By storing all the relevant information in one place, they make it easier for patients suitable for specific trials to be found and contacted quickly. Pharmaceutical companies have already shown interest in the patient registry, and are using it to obtain information regarding the feasibility and planning of multi-national clinical trials.