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Research Studies

Research opportunities are not one-size-fits-all. Some studies are looking for children, some are designed for youth and teens, some are for adults, and others are focused on caregivers or the whole family experience.

This page is here to help you find research participation opportunities that may fit your stage of life, your family role, and your disorder community.

Find studies by participant type

Depending on the study, opportunities may be open to:

Children Youth & Teens Adults Caregivers

Some research also welcomes parents, siblings, or family groups when the goal is to better understand lived experience, care needs, quality of life, or the impact of rare metabolic conditions across the lifespan.

Choose your disorder

Start by choosing your disorder. Within each section, we aim to organize current research opportunities by study type and by who can participate, including children, youth and teens, adults, caregivers, and families where applicable.

Research Studies & Participation Opportunities

We do our best to keep this section up to date as research continues to evolve. If you notice something missing, please let us know.

You can also explore additional clinical trials and research studies through trusted external databases:

Search ClinicalTrials.gov Search Viper Clinical Trials