Patient Registries

What is a patient registry?

Patient registries are databases containing information about individuals afflicted by a specific disease, condition, or disorder. Patients with the disease — or, alternatively, their parents or caregivers — can provide personal and medical information to the registry, which uses the information to coordinate clinical trials and aid researchers.

Why are registries important?

Scientific advances over recent years have lead to substantial changes in the treatment of many neuromuscular diseases. New therapeutic strategies are being developed and, for some of these treatments, plans for large studies involving patients from more than one country are already in place.

Several new therapeutic strategies for neuromuscular diseases target specific genetic defects. When a clinical trial is being planned, it is very important that patients suitable for that trial can be found and contacted quickly. The best way of ensuring this can happen is to make sure that patients’ details are all collected together in a single database or “registry” that contains all the information that researchers will need, including each patient’s particular genetic defect and other key information about their disease.

What are the objectives of the registries?

The primary objectives of patient registries are to:

  • Accelerate and facilitate clinical trials by locating potential research participants quickly and efficiently
  • Facilitate the planning of clinical trials
  • Assist the neuromuscular community with the development of recommendations and standards of care
  • Characterize and describe the specific neuromuscular disease population as a whole

How can I participate?

The answer depends on the design of the specific registry or program. With some registries, you can enter your information yourself online or on a paper form. For example: Duchenne Connect

Other registries require your physician or neuromuscular specialist to be a part of the enrolment and data collection process.

For example: If you choose to register with the Canadian Neuromuscular Disease Registry your doctor will submit information collected at your regular visits. Your name and other identifying information are removed and stored separately to ensure your privacy and data security.

Questions? Discuss with your health care team to learn more about your options.

Is My Data Safe?

Individuals are sometimes understandably wary when it comes to divulging personal and medical information to a third party. Respected registries (including the Canadian Neuromuscular Disease Registry) take every precaution in safeguarding data. Before you join a registry, find out about security and data-sharing policies.

Quest Magazine offers a helpful article addressing common questions patients have when considering registries.

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