Glut1 Deficiency Foundation

Research Ready Series

Philadelphia

The Glut1 Deficiency Foundation is pleased to offer the Research Ready Series, a special project to build a strong, patient-centered research foundation and increase research literacy in our community.

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goals of the series

  • educate the community on the importance of patient-centered outcomes research
  • increase research literacy and clinical trial readiness
  • help ensure research is focused on the needs and priorities of patients
  • strengthen relationships and form new partnerships and collaborations across all stakeholders

event details

Saturday, March 23, 2024

location

Embassy Suites Philadelphia - Valley Forge
888 Chesterbrook Blvd
Wayne, Pennsylvania 19087

A room block has been reserved with a discounted rate of $159 nightly plus taxes.

  • refrigerators and microwaves in each guest room
  • free made to order buffet breakfast for hotel guests
  • free happy hour social for hotel guests each evening
  • indoor pool, fitness center, and free parking
  • hotel discounts are available for 3/22 and 3/23 and may be extended for three days before and after based on availability
  • registration closes March 16th!

Links to the discount hotel reservations will be provided in the confirmation email you'll receive once you complete registration.

agenda

Saturday, March 23, 2024:

7:30 AM:  registration opens

9:00 AM:  opening and welcome

9:15-10:45:  
presentations

  • Glut1 Deficiency overview and experiences
    Eric Marsh, MD, PhD Children's Hospital of Philadelphia
       
  • Clinical trials overview and family perspectives
    Brian Gaucher, RN, BSN Children's Hospital of Philadelphia

10:45-11:00:  break and refreshments

11:00-11:30:  presentations

11:30-12:00:  patient stories and family introductions

12:00-1:00:  lunch meal

1:00-2:00:  presentations

2:00-2:15:  break and refreshments

2:15-4:00:  presentations

4:00-5:00: social time and refreshments

5:00 PM:  closing

registration

  • Registration is free for Glut1 Deficiency patients.
  • The registration fee is $25 per person for all others participants.
  • Participants interested in stipends may apply during the registration process.
  • Scholarship applications are available to cover registration fees when registration costs create a financial hardship.
  • Registration closes March 16th!

stipends

A limited number of stipends are available, but participation will be open to as many who would like join from any of our stakeholder groups - patients, caregivers, clinicians, researchers, and industry partners - and a stipend is not necessary to take part.

Participation Stipends:  $100 for successful completion of either in-person or virtual research fundamentals training
Travel Stipends:  $400 for in-person participants requiring travel and hotel accommodations in order to participate

  • An individual may receive both a participation and a travel stipend, but only one individual per family is eligible for a travel stipend.
  • Travel stipends require staying at the Embassy Suites as part of the discount room block.
  • Stipends will be paid upon the successful completion of the training and all related activities (pre-test, post-test, and survey).
  • Participants may apply for stipends as part of the registration process.
  • Stipends will be awarded based on order of registration/application.
  • Participants will be notified of stipend status once they have been allocated and awarded.
  • A waiting list will be used as needed in case anyone awarded stipends will not be able to complete the training.
  • Individuals from any location are eligible.
  • Stipends will be paid via check or PayPal.

child care

  • Child care will be provided at no additional cost to participants.
  • All children participating must be registered in advance as part of the general registration process.
  • Games, activities, and arts and crafts will be provided.
  • Age groups:  0 to 3 years; 4 to 12 years; 13 years and up
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This project is partially funded through a Patient- Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (#28926).

The Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by federal law in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

The Glut1 Deficiency Foundation is grateful for this opportunity and for the support from PCORI for this project.