Information for doctors

With the advent of clinical trials and research studies for some of the neuromuscular conditions, patient registries mean that patients who are eligible for certain clinical trials and research studies are readily identifiable. The registries contain accurate and updated information about the patients’ genetic mutations and clinical conditions. Without a patient registry for these rare conditions it means that finding enough patients for a meaningful trial can take years to recruit, delaying potential therapies.

In the Global FKRP Registry this information is both provided by the patient and the professionals involved in the patient’s care after full consent is given by the patient. Doctors will only be able to see their own patients' data. Information entered by a doctor for a patient will be viewable by that patient.

The questionnaire can be viewed before you log in. It will take you about 10 minutes to complete the required information once you have the patient notes to hand.

Information should be updated annually and an automated email reminder will be sent to prompt you to do this.

If you are a doctor who is not currently involved with the Registry but see patients with FKRP-related conditions then we would encourage you to contact us to discuss adding you to the Registry.