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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.

We can register either an individual doctor or a healthcare organisation. The name of the doctor or organisation will appear in the Registry's list of healthcare providers, allowing patients to select the appropriate provider when completing their registration. 

Multiple authorised users can be linked to the same healthcare provider account. This means that physiotherapist, nurses, study coordinators, assistants, and other members of the clinical team can be granted access to support data entry and help keep patient information up to date. 

Already involved with the Registry? 
If you are already participating in the Registry, please log in to access your account. 

Not yet involved with the Registry? 
If you are a doctor who cares for patients with FKRP-related conditions but are not currently involved with the Registry, we would be pleased to hear from you. Please contact us to discuss how you can become involved and contribute to the Registry.