flok Research | Ongoing Umbrella Study

flok Research is our umbrella study open to all flok App users age 18 or older, and to those under 18 with the consent of their parent or guardian. The study will attempt to:

  • Define the systemic phenotype of flok conditions across physiological systems and comorbidities thereof
  • Identify aspects of phenotype related to underlying disorder vs treatment side effects of a highly restrictive and synthetic diet.
  • Understand the impacts of lack of standardization of care across the population (age, sex assigned at birth and gender identity, economic and geographic distribution)
  • Understand the heterogeneity of phenotype and its impacts on quality of life (QOL)
  • Better understand individual protein tolerance
  • Predict metabolic aberrations (e.g. elevated amino acid levels, impending acute metabolic events)
  • Predict potential response to therapeutics based on genotype & phenotype

Inclusion criteria:

  • Resides in the United States  
  • Has a confirmed diagnosis of one of the flok conditions or is a caregiver for someone with a confirmed diagnosis of one of the flok conditions  
  • Is a legal adult (defined as having reached the age of 18) or has been invited to participate in the study by a parent or legal guardian  
  • Reads and understands English  
  • Has access to an Apple or Android mobile phone  
  • Is able to provide informed consent and follow study instructions 

How to Enroll:

  • Open or download the flok app (if your app is open, restart it)
  • On the main menu, visit Research > Manage Consent
  • Join studies under Research > Current Studies