Current Awardees’ Frequently Asked Questions

The Lipedema Foundation exists to be a catalyst and partner in research. This page addresses some routine requests and questions that often arise during the administration of an award. On this page, you will find short summaries of policy, resources like logos, and typical requests accompanied by the information needed to process those requests. On behalf of the Foundation and the Lipedema patients we serve, thank you for the passion you bring to your work and dedication to the health of our community.

+ AWARD PORTAL URL

  • Your Lipedema Foundation award can be accessed through our Wisehive portal. Please use this for accessing archived materials, and for submission of progress reporting.

+ ACKNOWLEDGMENT OF SUPPORT

All publications that benefit from Lipedema Foundation support should acknowledge funding. This use of name does not require permission for standard scholarly works and presentations. Where appropriate, awardees may include the Lipedema Foundation logo, versions of which are linked below. If you wish to download one of the PNG logos, you can do so via a right click or control + click action, followed by selecting "Save Link As." The EPS logo can be downloaded with a single left click.

Please let us know as early as possible if you have a paper that has approved or have a talk scheduled. Doing so allows us to plan marketing messages to highlight your work.

+ SOCIAL MEDIA AND COMMUNICATIONS

The Lipedema Foundation would love to promote your lipedema-related papers and projects. If you would like an LF-supported project promoted through our platform, please reach out via email to awards@lipedema.org. Be sure to include links, handles, tags, etc. that should be included in the post.

We invite you to follow us on the following platforms:

+ REGISTERING CLINICAL STUDIES

All LF-funded studies requiring the recruitment of new study participants should be registered with clinicaltrials.gov.

+ BUDGET CHANGES

To request changes in the allocation of funds between budget categories, please email awards@lipedema.org with a justification for the change. Changes that propose movement of the lesser of $5,000 or 25% of the budget category do not require approval.

+ NO-COST EXTENSIONS

No-Cost Extensions (NCEs) of up to 1 year are approved on an award-by-award basis. These should be submitted to awards@lipedema.org no later than 30 days prior to the termination date of the award.

When submitting an NCE request, please email awards@lipedema.org with the following information:

  • a justification for the NCE,
  • an updated timeline for completion of the work, and
  • a current Lipedema Foundation Expense Report signed by a financial officer of your institution.

The work performed during the NCE period should satisfy the existing approved scope of work. NCEs should not be requested to pursue work not contained in the approved aims.

If an NCE is approved for a term greater than 3 months, additional progress reporting may be required.

+ TRANSFER OF AWARD

Transfer to a New Institution:

Awards are made to institutions for work conducted by a specific investigator. In general, when an investigator changes institutions, the Lipedema Foundation expects the award to move with the investigator to the new institution, unless otherwise agreed. PIs requesting a transfer of funds should make a request via email to awards@lipedema.org. This request should include:

  • a letter from the new institution indicating the PI’s new position and title, as well as research space and other resources available for the completion of the work;
  • animal or human subject welfare assurances as appropriate;
  • a financial disclosure of remaining funds to be transferred; and
  • a brief updated scope of work (Full Application) that will be attached to the new contract with the new institution.

If approved, the LF will initiate a new contract with the new institution, reflective of the original research agreement.

Transfer to a New Principal Investigator:

If the Principal Investigator cannot continue to oversee the execution of the project, they may request a transfer to a new researcher. Such a request should be made via email to awards@lipedema.org. This request should include:

  • a justification for the change,
  • the CV of the new investigator,
  • details of the new investigator’s other commitments and award responsibilities,
  • a letter from the new investigator indicating a willingness to receive the responsibilities for the award, and
  • a letter from the current PI's and new PI's institution(s) indicating their agreement and willingness to abide by the transfer.

+ CHANGES TO SCOPE OF WORK OR MAJOR SUBCONTRACTS AND VENDORS

Desired changes to the aims of any award, or changes to the collaborating institutions or vendors, should be discussed with the Lipedema Foundation prior to the change. Agreed changes will be incorporated into an addendum to the Statement of Work for the award.

Modest adjustments to timelines can simply be communicated to the Foundation through the standard progress reporting templates.

To request these changes, the PI should submit a description of the changes via email, including signature of any co-PI or affected collaborators, to awards@lipedema.org.

+ PROGRESS AND FINANCIAL REPORTING PHILOSOPHY

Your progress reports are typically divided into an annual progress report and a mid-year check-in. In both cases, these reports have complementary written and presentation components. The written component serves primarily an administrative function, providing a formal place to acknowledge deliverables or record issues. The oral presentation is meant to go more deeply into data and facilitate a collaborative discussion with LF team members and advisors.

A template for your progress report PowerPoint presentation can be found on that progress report's form, while project busget templates for each annual report can be found on the project homepage your WizeHive portal.

+ LF AWARD NUMBERS

Wondering what your award number (something like LF35B-T) means? Let's break it down:

  • LF, of course, is self explanatory.
  • The integer is a sequential number beginning with our first award.
  • Any letter immediately following the integer indicates a renewal. (e.g. 'A' would be a first renewal, 'B' a second, 'C' a third, etc.).
  • Hyphenated flags can indicate a specific type of award, or an action that required creation of a new agreement. For example '-T' acknowledges a transferred award and '-B' indicates an infrastructure award like a biobank.
  • other components may indicate the (original) PI last name or funding mechanism.

+ REPORTING SIGNIFICANT ADVERSE EVENTS AND OTHER REPORTABLE ISSUES

Each award represents an investment by the Lipedema Foundation in work designed and conducted by the research team. The expectation of the Lipedema Foundation is, however, that certain issues will be brought to the attention of the Foundation should they arise during conduct of your award.

In general, any event that might significantly delay the research plan or compromise the interpretation of the program’s data should be brought to the attention of the Foundation. Most issues can be communicated through routine correspondence or progress reporting. Such events include:

  • emergence of conflicts of interest in the key personnel that might compromise perceived objectivity of the investigators
  • changes in key personnel
  • study participant recruitment difficulties
  • administrative difficulties such as contracting or delays in securing regulatory approvals

Examples of significant events that MUST be communicated:

Event Type Report to Lipedema Foundation
Safety: IRB/DSMB/FDA or similar suspensions or terminations of research Written documentation to LF within 3 business days of learning of event
Safety: Deaths related to study, unexpected serious adverse events Within 5 business days of learning of event
Safety: Serious or continuing noncompliance Within 10 business days of learning of event
Research Administration: Research misconduct Within 10 business days learning that a claim of research misconduct has been made against the award, and within 5 business days of the results of any adjudication of that claim
Employment: Change of employer for any key personnel Within 1 month of change of employment status
Research delay greater than 3 months If the delay cannot be resolved prior to the next progress report, the PI should alert the LF as soon as it is apparent to the PI that such a delay is likely.
  • This list is not exclusive. If you deem an event significant enough to warrant review of this table, we would advise contacting awards@lipedema.org for guidance.

+ Your Contract and this FAQ

The Sponsored Research Agreement (SRA) defines the terms and conditions of the award and outlines the governance of your award. This page is intended to provide quick access to commonly requested information. In the event of discrepancies, the contract language takes priority over comments found here.