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Registered Participants
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Survey Question Responses
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Healthcare Provider Listings
Registered Participants
Survey Question Responses
Healthcare Provider Listings
The following publications resulted from access to your de-identified registry data.
The Registry helps the LGDA to bring the patient perspective to research and public policy on behalf of people with a CLA.
The LGDA is collaborating with researchers planning and conducting clinical trials by adding your patient perspective to the trial protocol. We also collaborate with researchers on their academic study protocols.
Through the Patient Registry, we are able to share clinical-trial and study information with the CLA community. Those participants who have elected to receive notification from the Registry will be contacted by the Registry if they may be eligible for a trial or study.
The LGDA collaborates with other advocacy organizations to promote and support public policies that address research and healthcare needs of the rare disease community, with particular focus on those policies that most impact people with a CLA.
