NIH Rare Tumor Initiative – Now Operational

The NIH’s rare tumor study is now fully approved as of February, 2019 and is officially up and running. The study aims to collect the histories of thousands of patients with rare tumors. Since we formed, CACS members have participated in numerous NIH studies and trials. Some of us have benefited from that participation, but we have also done our part to advance the knowledge of our disease.

In this study, the nature of rare cancers will be studied to a depth that they never have before, using tools and technologies that weren’t available in the past  — looking at a tumor sample taken recently versus a sample from a prior surgery to create and compare a full genetic analysis of both. This is serious science.

What participants will gain from this study, which includes every current diagnostic tools, including the Ga68 scan is an accurate assessment of their condition. That means a built-in second opinion at no charge. If there is another applicable clinical trial going on at the NIH, participants are going to be made aware of it. Financial assistance is available for those who need it, for things like defraying the costs for accompanying caregivers if the patient requires a multi-day stay (based on “individual financial assessment”).

The only real risks you’re taking are the normal ones you encounter having blood drawn or having scans done. There is no requirement that participants have to take any medications, surgeries or any other kind of treatment or therapy. CACS members have seen that NIH offers a unique, caring patient experience. You have the benefit of some of the finest medical minds in the world, people who have an unquestionable commitment to the people they care for – as medicine is supposed to be practiced.

Here’s the sign-up information. The official title of the study is  “Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors”

If necessary, CACS has specific contacts, should you run into any difficulties with the link provided above.

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