Development and Assessment of The Polycystic Liver Disease Questionnaire (PLD-Q).

Overview

About this study

This Pilot study will enable development & assessment of a Polycystic Liver Disease-specific patient reported outcomes questionnaire (PLD-Q). Polycystic liver disease (PLD) is characterized by the formation of numerous cysts in the liver, and can lead to severe symptomatic hepatomegaly. It is common in patients with autosomal dominant polycystic liver disease (ADPLD) and autosomal dominant polycystic kidney disease (ADPKD).

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • Patients ≥ 18 year
  • Polycystic liver, defined by > 20 liver cysts on imaging

Exclusion Criteria:

  • Patients unable to speak or read the English properly
  • History of kidney or liver transplantation
  • Dialysis
  • Current use of experimental drugs (e.g. lanreotide, octreotide)
  • Recent liver resection or major surgery
  • Other comorbidities that can affect the outcome of the questionnaire, as deemed by the investigators

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Marie Hogan, M.D., Ph.D.

Closed for enrollment

Contact information:

Marie Hogan M.D., Ph.D.

(507) 284-2944

Hogan.Marie@mayo.edu

More information

Publications

Publications are currently not available