We need controls!
No, not cockpit controls or videogame controls, and no, we’re not out of control.
We need control participants for the Dupuytren Biomarker Discovery Pilot Study.
Our goal is to make progress toward a Dupuytren cure as quickly as possible.
We’re pushing forward with the Dupuytren Biomarker Discovery Pilot Study. Because of COVID-19, there’s a hold right now on blood sample collection. Delays will be temporary for some participants, but others may no longer be able to participate. As a result, we need to enroll more participants. Our greatest need right now is enrolling more control participants. We need your help.
Who can enroll as a control?
We need men and women who roughly match Dupuytren enrollees but who don’t have Dupuytren/Ledderhose/Frozen shoulder/Peyronie and don’t have blood relatives with Dupuytren. Most Dupuytren enrollees are:
- 40 or older
- Not overweight
- Without serious health conditions or Rheumatoid arthritis
You can help by encouraging people who match this profile to enroll in the International Dupuytren Data bank: https://DupStudy.com. Friends, in-laws, neighbors, co-workers, and others who want to do a good deed even in COVID-19 isolation.
Why? Simple: we need control participants to complete the biomarker research study.
Is it safe?
It’s as safe as medical survey research can be. We’re following all currently recommended measures to protect the privacy of all IDDB enrollees, including these and other steps:
- All participant data is de-identified to protect participant identity and prevent biasing the research. For example, Protected Health Information, contact information, image files, specimen collection information, and study laboratory findings are each kept in separate documents for each participant. Each document has a different random ID number. Only limited research staff can access the key linking different documents for any one participant.
- The research protocol is approved and monitored by an independent licensed Investigational Review Board to ensure compliance with US and international laws protecting the rights and privacy of research participants.
- Enrollment forms run on secure SSL certified web servers. Participant data is stored on local servers, which are not accessible online.
- Enrollee data will not be sold or shared with commercial organizations.
- Any requests for access to individual data require additional consent from the research participant.
- We need the combined expertise of the global Dupuytren research community to analyze biomarker data. Data for analysis will be made available only in de-identified form and only to vetted academic researchers and only if they agree that it will not be otherwise shared.
We are using all available safeguards to protect the privacy of research participants. Participant data contains no financial or contact group information. The risk of a data breach is extremely low, but not zero. Each person can freely decide whether the benefit to the global Dupuytren community outweighs risk of access to their raw laboratory data.
So, what is the next step? Help recruit control participants to enroll in the IDDB. The more of us working together, the faster we can complete this critical research!