Join the global PDCD patient registry today.

PDCD Patient Registry

Your loved one’s diagnosis of Pyruvate Dehydrogenase Complex Deficiency contributes to science’s basic understanding of the disease. Taking 10-20 minutes to enroll in the international PDCD registry is one of the most important contributions you can make to advancing cures for this disease. Have your loved one’s genetic report handy and plan on needing 10-20 minutes of focus time to fill out this form.

The PDCD patient registry includes a consent form for you to read and sign, and then collects basic information including your loved one’s diagnosis, demographics, symptoms, healthcare utilization, diet modifications, and caregiver burden. This will take 10-20 minutes. Please have your loved one’s genetic report available. PDCD encompasses many different genetic mutations beyond PDHA1. 

Important: Our patient registry is hosted on the CoRDS platform by Sanford Research, a strategic decision to reduce the burden of registering on the 25-35% of PDCD patients who also have a Leigh Syndrome diagnosis. Patients with both PDCD and LS can fill out one general survey and consent form and then fill out the disease specific surveys all on the same platform. If your loved one has both a PDCD and LS diagnosis, make sure to add the Leigh Syndrome diagnosis after you have selected the PDCD diagnosis.

How to enroll in the PDCD Registry:

Step 1. Fill out the general consent form at this link.

Step 2. You will receive an email within 1-5 minutes to fill out your disease-specific survey(s).

Step 3. Create an account password and once logged in you will have access to complete the PDCD  (and LS if applicable) surveys.

Benefits to registering:

  • Joining a Research Network gathering patient information toward understanding Pyruvate Dehydrogenase Complex Deficiency.

  • Keeping you up-to-date on the latest information regarding PDCD.

  • Staying informed about opportunities to participate in research and clinical trials.

  • Receiving family meeting invitations, special mailings, and information regarding any discoveries about PDCD that would impact care decisions.

  • If you have questions, Hope for PDCD will help you every step of the way. Contact info@hopeforpdcd.org.

Questions?

Please contact CoRDS at (877) 658-9192 during business hours, 8:00am-4:30pm (CST) Monday through Friday or email cords@sanfordhealth.org.