Privacy & Use of Information Statement
LichenS Support Network (LSSN)
LichenS Support Network respects your privacy and understands that information about your health is personal. We are committed to being transparent about the information we collect through our Research Interest Registry and how we use it.
Why We Collect Information
The Research Interest Registry helps LSSN learn about people living with lichen sclerosus (LS) and lichen planus (LP) who are interested in hearing about research opportunities.
By joining, you help us better understand the types of research that may be relevant to our community.
The registry is not a clinical trial, medical study, or patient enrollment program.
What Information We Collect
Depending on the information you choose to provide, we may collect:
- Your name and contact information
- Your age range and general geographic location
- Your LS or LP diagnosis, including affected areas or subtypes
- Information about previous biopsies
- Types of research you are interested in hearing about
- Preferences for remote or in-person participation
- Potential willingness to travel for research
- Other information you voluntarily share about your condition or research interests
For parents or legal guardians registering a child or dependent, we may also collect information about the child or dependent and their condition.
How We Use Your Information
LSSN uses registry information to:
- Identify research opportunities that may be relevant to your diagnosis and interests
- Contact you about potentially relevant studies or research activities
- Better understand the research interests and participation preferences of the LS and LP communities
- Help inform future patient education and research engagement efforts
We may also use combined, non-identifying information to describe general community research interests to research organizations, pharmaceutical companies, or other partners.
Who Can Access Your Information?
Identifiable registry information is accessible only to authorized LSSN staff.
LSSN does not provide pharmaceutical companies, research organizations, or other research partners with your name, contact information, or identifiable registry responses.
If we learn about a research opportunity that may be relevant to you, LSSN may contact you with information about it.
You decide whether to respond, contact the research team, or pursue participation.
Where Your Information Is Stored
Registry information is collected through Monday.com WorkForms and stored within LSSN’s Monday.com account.
Monday.com provides the technology used to collect and store the information. Access within LSSN is limited to authorized staff.
Joining the Registry Is Voluntary
Participation in the Research Interest Registry is entirely voluntary.
Joining does not mean that you:
- Have agreed to participate in a clinical trial or research study
- Meet the eligibility requirements for any study
- Have agreed to undergo a biopsy, testing, or treatment
- Will be contacted about every available research opportunity
Each research study has its own eligibility requirements and consent process. The research team determines eligibility, and you decide whether to participate.
Updating or Removing Your Information
You may request to review, correct, update, or remove your registry information at any time by contacting:
support@lssupportnetwork.org
LSSN will review and respond to your request.
Questions About Your Privacy
If you have questions about the registry or how your information is used, please contact:
LichenS Support Network
support@lssupportnetwork.org
lssupportnetwork.org