Recruitment for Gut Microbiome Study RFR:

RFR is pleased to announce the opening of recruitment for the Gut Microbiome in PWS Individuals study that was funded with the money raised in the 2021 RFR fundraising campaign. Please read the following recruitment information and, if interested, please contact Lauren Harvey as described below. Two different arms to the study:

Arm 1 (longitudinal study)

Infants – We will be enrolling 20 individuals with PWS ages 1 week to 6 months who have a family member (sibling or parent) willing to send in stool samples for comparison. Stool samples from the infant will be collected every 6 months for a 2 year duration to allow us to determine how the gut microbiome changes as infants with PWS progress through the early nutritional phases. The family member will only send a single stool sample for comparison. Enrollment will be on a first-come, first-serve basis.

Arm 2 (cross-sectional study)

We will be enrolling 30 individuals with PWS who are in nutritional phases 2a, 2b, or 3, and will ask for a single stool sample from each participant. If you do not know the nutritional phase your child is currently in, you will be screened by Dr. Miller to determine the nutritional phase prior to enrollment. We would like to have 10 participants from each of those nutritional phases, and each participant will need to have a sibling (preferred) or a family member living in the household willing to give a stool sample to use for comparison with the affected individual. Enrollment will be on a first-come, first-serve basis by nutritional phase.

If you are interested in your child with PWS participating in this study, please contact the study coordinator, Lauren Harvey at Title the email “gut microbiome study”. In order to be considered for the study, Lauren will only need the child’s name, age, nutritional phase (if known), and confirmation that there is a family member who is also willing to participate in the trial.