Rare Disease Advocates Should Look to the Success of Cancer Patient Registries

According to a story from curetoday.com, cancer patient registries have had a major impact in improving outcomes for patients. Take the story of Rhonda and Jeff Meckstroth as an example. Jeff was diagnosed with stage 4 non-small cell lung cancer (NSCLC) with ALK rearrangement. The couple struck an agreement: Jeff would do his best to continue his work on their farm, and Rhonda would commit herself to research so that he could get the best possible treatment.

Despite a serious diagnosis, Jeff’s cancer is under control four years later. It took a few tries to find a medication that worked, but ultimately, Rhonda’s efforts have paid off big time. Rhonda has become an active advocate in the lung cancer community and also helps recruit patients to the Lung Cancer Registry.

Rare Disease Patient Registries

Here and there we have occasionally mentioned registries on our site. Some of the best organized rare disease communities have them, but many do not. This is a real shame because patient registries can help speed up the progress of rare disease research and directly contribute to the development of new breakthrough treatments that can completely change the lives of patients.

Patient registries are exactly what they sound like: they are essentially a record of known patients with a certain disease. This alone may not seem that helpful, but it can be beneficial in a lot of ways. First of all, they can be a ready list of contact information for researchers that can help patients get recruited for important studies or even clinical trials for new drugs. Some registries also request that patients contribute their own health data so that it can be used by scientists to conduct research and develop new treatments.

Registries are an avenue for communication that goes both ways and can make a big difference in making research more efficient. The most effective patient registries also regularly encourage feedback from patients about their experiences with treatment, symptoms, and more.

Weighing The Pros and Cons

In truth, a registry is not always practical for all rare diseases, particularly the ones that are extremely rare and only have a small number of known patients. It also requires significant dedication and organizational momentum to maintain and update. Other downsides are that it can be difficult for patients who don’t have regular computer/internet access. Sometimes the medical field doesn’t respect the data that could be gathered from registries.

Nevertheless, the benefits certainly outweigh the downsides and rare disease communities should consider beginning a registry if they have the capacity to create one.


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