The Warburg Micro registry provides real world knowledge for researchers of SPG69.
Adding your information will help us get closer to finding therapies for the RAB18 deficiency/ Warburg Micro Syndrome
Join the Warburg Micro Registry
In recognition of the first WMS patient registry we’re offering a prize for completed entries
Enroll and complete the Warburg Micro Syndrome Patient Registry at CoRDS by May 31st to be included in a randomized drawing for one of four $100 (USD) Visa gift cards! CoRDS will ship to any country.
*We have extended the date to May 31st due to delays in mail. There’s still time- enroll now!
Only complete questionnaires will be included. CoRDS handles the drawing and contacts the winners. In the case the participant is a minor, the adult completing the registry will be considered the entrant. Void where prohibited. Only one prize per registry participant .
Who should register?
Guardians and caregivers should register on behalf of each child with Warburg Micro or Martsolf Syndrome separately.
The participant is assigned a Global Unique Identifier (GUID) that enables deidentification of the data when shared with approved researchers to protect patient’s privacy.
The deidentified data is shared with researchers only with approval from the foundation and Sanford’s Institutional Review Board.
Although the registry is currently available only in English, you may receive help from a trusted physician or family. Please contact us at email@example.com and we may be able to provide additional language help.
After completing the consent section, you will be taken through a series of sections about the patient’s medical history. We suggest that you first collect any information you have including labs and medical records to make this process easier. If you find that you don’t have enough time to complete all the information at one time, you can login again and complete at a later date.
The registry contains 67 questions which are mostly multiple choice. We expect it may take 1- 2 hours.
Enrolling in the WMS Patient Registry makes details about your child’s symptoms available to medical professionals and scientists and that may help raise awareness, stimulate research, and improve diagnoses.