The COVID-19 pandemic has done for data what the $9.99 all-you-can-eat buffet has done for fine dining. There’s more available than you’d ever want and most of it is not very good.

For the rare disease community, where many people are at an elevated risk of a more severe reaction to exposure to the virus, the situation can be frustrating. Gathering the right data can play a critical role in helping rare disease patients understand their risks, complications, and treatment options, but now there is little insight that can be gleaned from available data.

Now, an effort is underway to help researcher ask the right questions to better understand the impacts of COVID-19 on the rare disease community, thanks to Jason Colquitt, CEO of the Across Healthcare, a company that delivers technology solutions to healthcare organizations.

Colquitt hit upon a simple idea while talking to various rare disease patient groups to build a data set of people with rare diseases who had tested positive for COVID-19. He’s created a registry for rare disease patients to provide some basic information if they have contracted the virus so researchers that may choose to pursue studies can find them.

“We were watching as COVID-19 was starting to take over the U.S. My company and several organizations we work with were contemplating what we could do to help at this time not knowing what was happening,” said Colquitt, who has long worked with the rare disease community. “We started reaching out to other patient advocacy leaders NIH, and academic researchers and asked would this be a good idea. They told us it would, which validated it for us.”

With that, the RAREwithCOVID registry was born.

The registry is simple and intended to be lightweight. People with a rare disease who have tested positive for COVID-19 can go to the contact registry and enter their names. They will need to sign a consent form and answer a short questionnaire.

Among the information the registry seeks is contact information for a patient or caregiver, the date the patient tested positive for COVID-19, and a standardized case report form. All of the information is patient-reported.

Colquitt said the registry is a philanthropic effort and the data will be made free of charge to qualified researchers in accordance with its institutional review board’s oversight.

The registry is up and running. As word spreads, people are signing up. It already has participants in the United States, New Zealand.

“We are simply looking for patients who have tested positive with any rare disease. We decided to make it global, said Colquitt, who is the principal investigator for the registry. We didn’t see anyone doing anything like this.”

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