Please join us for our 7th Annual PCD Family Day June 26-28, 2009 in
Buffalo, New York.
Buffalo, NY--June 26-28, 2009
Family Day 2009 will be a special event, with participants invited to take part in the development of a Quality of Life (QOL) survey to be used to evaluate in future studies of therapies in PCD. In addition to our standard educational program, we are pleased to welcome psychologist Dr. Alexandra Quittner. Dr. Quittner has been instrumental in developing similar tools for the cystic fibrosis community and for individuals with non-CF bronchiectasis.
For this first QOL tool, we will be focusing on children, teens and young adults under the age of 22 and parents of children in that age range. Individuals in these groups will have the opportunity to participate in formal group interviews. All attendees will be welcome to share in the informal discussions. Participants for the formal interviews will need to have a confirmed diagnosis of PCD either by: 1.) Participation in the GDMCC study program with a "probable" or "confirmed" diagnosis by one of the seven participating research sites, or 2.) Willing to sign a medical records release so participating researchers can evaluate diagnostic records. The purpose for this is not to exclude anyone. However, we know through the current study that there are many misdiagnosed patients and for this survey to be valid, it is important that the QOL experiences shared by the group accurately reflect actual PCD experience.
A validated QOL tool is now a requirement for clinical research study funding through the National Institutes of Health (NIH). This is an important advance in patient care, with research funders recognizing that it is important for therapies to have a beneficial impact on daily life and not solely on lab tests. We are pleased to finally have reached the point where trials of therapeutic options for PCD are now a reality and it is crucial that we complete this QOL tool in the very near future.
We also know that these are tough financial times for many families. The PCD Foundation is dedicated to assisting families to participate in this event through reduced or waived fees for registration, grants for travel and lodging assistance, etc. If you would like to participate, but are concerned about the logistics of attending, please contact the PCDF. We will make every effort to facilitate your participation.
Complete registration details will be sent via email and posted to the PCDF website (www.pcdfoundation.org) by the end of this week. If you would prefer them in hard copy format, please contact the PCDF.
Hope to see you there!
Michele Manion, Executive Director
PCD Foundation