Lipodystrophy Connect Patient Registry

Completed

Conditions studied: Lipodystrophy

In brief

Lipodystrophy Connect is an online survey tool designed to collect demographic data and health information from individuals with Lipodystrophy.

Key facts

Study ID

NCT02577952

Run by

PatientCrossroads

People needed

257

Starts

2014-01-01

Expected to finish

2018-11-08

Last updated by the study team

2019-04-22

Who can join

Age: any. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Adults, > 18 years of age, with a diagnosis or suspected diagnosis of lipodystrophy, who are willing and able to provide informed consent, or for whom a legally authorized representative gives permission on behalf of the person to participate.
• Minors (less than 18 years of age) with a diagnosis of lipodystrophy with a parent(s) or legally authorized representative who provides informed consent to participate and enter registry information on behalf of the minor. Note: Minors who are 7-17 years of age will be asked to provide assent to participate.
• Adults > 18 years of age, without lipodystrophy, who are willing and able to provide informed consent and are family members of patients diagnosed with familial partial lipodystrophy (FPL) or congenital generalized lipodystrophy (CGL) and want to provide information about themselves.

You may not qualify if…

• A person who does not have a suspected or confirmed diagnosis of Lipodystrophy.
• A person who has a known diagnosis of HIV-associated Lipodystrophy.

Where it is running

• PatientCrossroads — San Francisco, California, United States

Full record on ClinicalTrials.gov

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