RAREwithCOVID is a contact registry for rare disease patients who have contracted COVID-19. As Jason Colquitt, CEO of Across Healthcare, saw COVID-19 spreading rapidly around the world and specifically into the East coast of the United States where Mr. Colquitt is based, Mr. Colquitt reached out to patient advocacy leaders that he works with, NIH researchers, and other academic researchers asking if a COVID-19 contact registry for those with rare diseases would be helpful. They gave him the assurance that validated the need. After additional research indicated nothing was being done to collect this type information for the rare disease communities, Mr. Colquitt set out on the mission to build this registry and connect with the rare disease communities.
Quickly switching from concept to execution, Mr. Colquitt developed the protocol and informed consent. Next, he solicited Advarra’s Institutional Review Board (IRB) services for review and approval. In parallel to the IRB review, Mr. Colquitt’s team began to configure Across Healthcare’s MATRIX Platform to facilitate RAREwithCOVID, including the RAREwithCOVID Informed Consent and the electronic Case Report Form (eCRF). The project went from concept to reality in 3 weeks, and on April 8, 2020, RAREwithCOVID was launched into production.
Those who join RAREwithCOVID will sign a consent form, provide contact information, and fill out a short COVID-19 questionnaire. All information is patient-reported or can be entered by a caregiver on behalf of the patient. All data gathered will be used to improve awareness of COVID-19 among the rare disease communities and to facilitate opportunities for research. RAREwithCOVID is working with many patient groups to provide appropriate insights back to their communities at no cost. RAREwithCOVID seeks to be synergistic to the many great rare disease organizations, databases, and projects.
Mr. Colquitt has been blessed to be involved in healthcare information technology for 22 years and in 2019 his team at Across Healthcare launched the MATRIX platform to help rare disease patients and caregivers with daily symptom and activity tracking as well as medication management and adherence. Mr. Colquitt has Carnitine Palmitoyltransferase (CPT) deficiency, a rare metabolic disorder which helps him connect to the rare disease community that he feels called to help through his technical talents.
Across Healthcare has solely funded RAREwithCOVID as part of their philanthropic mission and passion to help rare disease patients and their caregivers. If you would like to join us in promoting or supporting RAREwithCOVID, we would love to include you in our growing list of promoters and supporters. In the first month, we have had 2,500 visitors to our RAREwithCOVID site and almost daily receive requests to join.
Additionally, we have seen patients joining from the US and around the world including South America, Europe, the Middle East, and New Zealand.
We know our efforts are made stronger when we work together!
Some of the Across Healthcare team showing their stripes and denim on Rare Disease Day!