One of the primary goals of Lipodystrophy Connect is to better understand and improve the lives of the people and families living with Lipodystrophy by building a large, robust database of information that will help:
- The research community launch clinical trials and studies
- Provide valuable quality-of-life information that can be used to advocate on behalf of the community
- Assist in identifying the support and outreach programs that will be most useful to community members
- Educate people living with Lipodystrophy, their caregivers and family members about the larger Lipodystrophy community demographics, symptoms and experiences.
We hope that by providing this information and making it easier to identify potential participants for research studies and clinical trials we can empower people and families living with Lipodystrophy, raise the profile of this disease with key institutions and decision-makers, and accelerate research progress toward treatments and a cure for Lipodystrophy.
Registered researchers and other professionals are able to access de-identified aggregate data to identify target populations for trial/study planning and recruitment. Study investigators, sponsors, or other research professionals are encouraged to join to explore the database and learn more about Lipodystrophy and the community of people living with it. Investigators can partner with LD-Connect to send information to registered participants about opportunities to participate clinical trials and research studies. Click here to learn more about registering as a professional!
Registered participants (individuals and families living with Lipodystrophy and their caregivers) can access information about current clinical trials and research opportunities for individuals with Lipodystrophy and stay current on research news and updates.