LD Connect: Access to Registry Data

LD Connect brings the experiences and data reported by those living with Lipodystrophy to you.
The LD Connect registry is a central resource to better understand the health characteristics and needs of those living with Lipodystrophy. LD Connect makes the de-identified data collected by the registry available to any researcher, advocacy organization or other requestor interested in the lipodystrophy community for non-commercial purposes. Commercial requests will be reviewed by Invitae to discuss specific de-identified data needs and effort required to collect such data.
Approved registered users will use a unique username and password to view the current registry data on the Registry Data section of the website.

Custom Data Reports

To accelerate the understanding of lipodystrophy and scientific investigations, the LD Connect Registry makes the data available to the greater community. Contact the LD Connect registry coordinator (coordinator@ldconnect.org) to discuss custom data requests.

Patient Notices and Recruitment

Need to find participants for a lipodystrophy study or clinical trial?

LD Connect can be used to disseminate recruitment notices to registry participants or target populations with the characteristics needed for recruitment of specific studies. LD Connect is deeply committed to issues of privacy and identity, and will take every available measure to ensure the security of the personal information of participants. Only studies approved by an Institutional Review Board or human subject ethics committee will be sent to LD Connect participants.

How does it work?

The LD Connect coordinator will send study recruitment notices to participants by email and will post study notices on the LD Connect registry website. The registry will not supply identifying information to a designated study coordinator – Participants will be referred to the study coordinator for more information and to be consented into the study. The registry can pre-screen participants as likely candidates, however, investigators/industry sponsors responsible for the study will determine the prospective participants’ full eligibility, and are responsible for addressing and answering participant concerns and questions about the study opportunity.

Interested investigators are encouraged to contact the LD Connect registry coordinator by email (coordinator@ldconnect.org) to discuss using the registry to notify participants of study opportunities.

Upon approval, study investigators/sponsors will be contacted by the registry coordinator to establish dates for distribution of notices. Study investigators/sponsors should be aware that any communication to participants or information on the website will include language to the effect that LD Connect does not endorse specific studies, and provides recruitment notices as a service to the community. Participants are encouraged to discuss all study opportunities with their medical care providers.

Collect New Data

To accelerate the pursuit of scientific investigation and understanding of lipodystrophy, the LD Connect registry can be used by investigators to collaborate and collect new data through supplementary surveys presented to LD Connect members. Interested investigators are encouraged to contact the LD Connect registry coordinator by email (coordinator@ldconnect.org) to discuss this service. Collected data may be subject to the Publication Guidelines.

Data Access and Publication Guidelines

Per the Terms of Use of registry data, users:

  • Agree that the ability to access and search de-identified information in the registry database is for your internal research or business use only.
  • Agree that all Invitae generated content available at LD Connect is owned by Invitae and all Patient Data is owned by the registry participant.
  • You agree not to sell, publish, present or transfer the unaltered Patient Data to any third party or for any commercial purpose.
  • You agree to seek the written permission of Invitae prior to any publication or presentation of secondary analyses of the Patient Data.
  • You agree to clearly attribute Invitae Corporation and the LD Connect in any research papers or other publications which make use of any Patient Data.
  • You agree to acknowledge the patient advocacy organization(s) involved with LD Connect in any research papers or other publications which make use of any Patient Data.

LD Connect maintains an up-to-date repository of research requests, related approvals, bibliography, and repository of all publications pertaining to the registry. Lead authors are responsible to provide LD Connect with all final publications.

Future Industry Sponsorship

Additional sponsorship of LD Connect by companies with an interest in Lipodystrophy are available. All industry sponsors will be provided with routine quarterly registry data reports.

Future industry sponsors may request access to the database for scientific investigation or designate independent investigators to pursue research questions as outlined in the agreement between the industry sponsor and Invitae. If available, industry sponsors may also request special reports of their own product(s) and their use in a different format or content from a standard report, which may include comparative data from the larger database. The data regarding specific industry sponsors’ products will be protected for their use only and any reference in publications will be general in nature. Each data request must be submitted in writing to Invitae.