Take Part in Research

 

Lipoedema UK & De Montfort University Questionnaire

 

An investigation into the impact of diet and lifestyle on the management of lipoedema.

Thank you for taking part in this study. The aim of the study is to gain an understanding of the self-reported dietary and lifestyle impact on the efficacy of management for lipoedema conditions through an administration of an online survey questionnaire to a UK population with lipoedema. Your data will be kept confidential at all times. Raw data will be kept on password-protected computers, which will only be accessible to the named researchers. Raw data will be destroyed after five years in accordance with DMU ethics policy.

If you require any further information about Lipoedema UK and all supports you may obtain from them and other resources should any need arises throughout the study, please click on the Debrief Form below. 

The Lipedema Foundation based in the USA now have an online registry (Lipedema Foundation Registry LFR) established to help our lipedema community, including affected individuals, families, clinicians, and researchers. Lipoedema UK encourage all our members, their families and friends to take part. It’s goals are to:

  • learn more about lipedema
  • understand barriers to diagnosis
  • better manage symptoms
  • assess quality of life impact
  • develop new treatment approaches
This registry is only for: 

–      People with lipedema

–      People who think they might have lipedema, and 

–      People who do not have lipedema (to use as comparison groups) 

Participants under 18 must have an adult enroll in the registry on their behalf. The adult must:

–       Be 18 years of age or older

–       Be the parent, legal guardian, or other legally authorized representative of the participant 

–       Be willing and able to provide consent for the child under 18

–       Obtain assent (agreement) from the minor participant, if they are between 13-17 years of age and are able to assent. Children under 13 are able to participate, although assent is not required.

Once a child turns 18, the Lipedema Foundation will contact the family and request that the participant provide his/her own consent to stay in the LFR.

Individuals from any country are welcome to participate in the LFR. Currently, the LFR is only available in English and participants must be able to read the consent and answer the surveys in English.

The Lipedema Foundation (LF) has developed an “Initial Survey” that should take approximately 60 minutes to complete. It will help provide direction for what types of research we should fund next.

To complete the survey please click on the image below. If you have any questions, comments or issues with the Registry – please contact Registry@lipedema.org.