Haemochromatosis patients' research priorities: Towards an improved quality of life.

Lídia Romero-CortadellasVeronica VenturiJuan Carlos Martín-SánchezKetil ToskaDianne PrinceBarbara ButzeckGraça PortoNils Thorm MilmanHi/Efaph Survey CommitteeMayka Sánchez

Published in: Health expectations : an international journal of public participation in health care and health policy (2023)

Nearly 1500 patients with hereditary HC responded to an anonymized online survey in which research and clinical priorities were addressed regarding this chronic and rare disease.

Keyphrases

end stage renal disease
ejection fraction
newly diagnosed
chronic kidney disease
prognostic factors
social media
cross sectional
patient reported
drug induced