Professionals, advocacy representatives and other users with a scientific or research interest in lipodystrophy can create an account on the LD Connect Professional Portal. Once your account is approved, you will have access to the de-identified data from LD Connect participants. Contact the LD Connect registry coordinator at email@example.com for custom reports and other partnership opportunities.
LD Connect and Medical Research
A key goal of the LD Connect Registry is to assist clinicians, pharmaceutical companies and researchers in developing new clinical trials and studies for lipodystrophy. Through LD Connect, study investigators can better understand the characteristics of those with LD needed for study planning or recruitment.
Understanding Registry Data and Curation
De-identified data gathered from self-report survey data is made available to the LD Connect community of registered participants, families, medical care providers and researchers, in the hope that this data will support breakthroughs and expedite clinical trials that could lead to better treatments and care management.
LD Connect curates a portion of the clinical and genotypic information submitted by each participant. Curation is an ongoing and continuous process; however, the aggregate registry data will include all curated and uncurated data. Specific details of curation can be discussed with the LD Connect registry, and may be used to refine data reports.
LD Connect, as a cooperative resource, has an interest in pursuing scientific investigation and shall grant full access to use of the databases subject to the limitations outlined in the following agreement. These limitations are:
Only de-identified data will be provided to requestors.
Any use of the data must not compete with or interfere with the development, operation, or marketing of the registry by LD Connect, unless approved in writing by the Governing Board.
All publications using registry data will be approved by the Data Access and Publications Committee and abide by any publication policies established by this Committee (refer to the Publication Guidelines)