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Xeroderma Pigmentosum (XP) Foundation
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EVERY STORY MATTERS... BE PART OF THE SOLUTION

 WITH AN ULTRA RARE DISEASE ONLY WHEN

WE ALL COME TOGETHER 

CAN WE MAKE A DIFFERENCE FOR US 

AND FOR THOSE TO COME IN THE FUTURE!

Submit Registry Interest Form

What is the Registry?

The XP Registry is a national research effort to learn more about

Xeroderma Pigmentosum (XP). 

The research will explore four key areas: 

Medical, SunProtective Behaviors, Financial Burden, and Quality of Life.


Submit a registry interest form to receive a link to join the registry. 

Why should I Participate?

#1 Reason: 

We all need to participate for this to be a resource within our XP community! 

We are an ultra rare disease and with that every person matters!


  • Help us advocate for XP! Data from the registry can help identify unmet needs and strengthen XP advocacy efforts. 
  • Help us further research! The registry strengthens our position to collaborate with those whose can advance scientific and medical research related to XP and related DNA repair disorders. This includes collaboration with researchers, pharmaceutical companies, academic institutions, healthcare providers, governmental agencies, and other charitable organizations. 
  • Help us to have collective knowledge! The registry gives us a resource that we can all use. Collective knowledge in one registry will be a valuable resource within our XP Community. You will receive updated findings from the survey which can help XP families better manage their care and understand the implications of XP. You can also reach out to learn more if you have a specific question.
  • Help us have a more thorough understanding of XP!  We need to understand impacts from the different complementation groups from a real perspective of those living with the disease! 

Note:  Your privacy is important. 

All data is kept secure and confidential. 





Common Questions

Who Can Join the Registry?

Are my Responses Confidential?

Who Can Join the Registry?

  • Adults with XP who can provide their own consent
  • Individuals of all ages diagnosed with XP
  • Caregivers or legally authorized representatives of adults with XP who may need assistance
  • Family members or other knowledgeable individuals of a deceased person with XP

What is Involved?

Are my Responses Confidential?

Who Can Join the Registry?

  • Participation is simple and will be done online.
  • Complete the Interest Form and an email will be sent to you with a link to the survey.
  • From the email you receive, you will complete an electronic consent and survey with questions on four primary areas:

Medical Information 

Sun-Protective Behaviors 

Financial Burden

 Psychosocial/Quality of Life

  • The survey will take approximately one hour to complete. We ask that you be as honest and thorough as possible so that we have a reliable registry.
  • Your participation is voluntary.
  • You may stop the survey at any time.
  • Follow-up surveys may be invited periodically if you indicate interest. Having information on the progression of XP will greatly assist in our collective knowledge.





Are my Responses Confidential?

Are my Responses Confidential?

Are my Responses Confidential?

  • Each survey will be de-identified. In other words each completed survey will be given a number rather than using names. Only the Primary Investigator (Dr. Johanna Sweet) will have access to your identifiable information. 
  • Only results in the aggregate will be provided. As some complementation groups are smaller, all effort will be made to maintain confidentiality or we will contact you directly to ask before sharing.
  • De-identified information or aggregate results may be shared with researchers, medical institutions, or pharmaceutical companies to advance XP research in accordance with ethical and legal standards. Again, your name is not attached to the information.
  • No one on the XP Foundation, the XP Family Support Group, or any other XP related group will have access to individual information or information that will compromise your confidentiality. Only the Primary Investigator, Dr. Johanna Sweet, will have access and is responsible for ensuring confidentiality.
  • The Institutional Review Board (IRB) at Roanoke College has reviewed and assessed the survey protocol and has granted approval to conduct research. IRB is a required process for any human research.
  • The platform used for the survey, REDCap, is a HIPPA compliant platform that is commonly used in the medical field. 
  • You may stop the survey at anytime.

The XP Foundation is organized exclusively for charitable, educational, and scientific purposes within the meaning of Section 501(c)(3) of the Internal Revenue Code, or the corresponding section of any future federal tax law. 

Copyright © 2026 XP Foundation All Rights Reserved

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