In January 2024, the PCD Foundation, a North American organisation aiming improve the quality of life for those affected by PCD and to develop the means to find a cure for the disease, organised the PCD On The Move conference in San Juan, Puerto Rico, together with the PCD Foundation Clinical and Research Centers Network. This year, the conference attracted large international audience of researchers, clinicians, scientists, as well as people affected by PCD and their families.
Myrofora Goutaki represented the PCD research team of ISPM Bern, presenting work from ongoing studies led by the team, and received the prize for the Best Clinical Research Poster presentation for the work on “Infertility among adults with primary ciliary dyskinesia”. This is part of the work of Leonie Schreck on fertility care and problems of people with PCD, in the Living with PCD study, led by Prof Claudia Kuehni. Living with PCD, formerly COVID-PCD, is a large participatory study developed together with PCD support groups worldwide, that aims to answer emerging questions about the disease. The topic of fertility is one of the most important but not well-researched in the field of PCD. Myrofora Goutaki presented results from 265 adults participating in the Living with PCD study, showing that females and males with PCD frequently experienced infertility but fertility treatments resulted in pregnancies among two-thirds of individuals who used it. Results also suggest that females with PCD have an increased risk of ectopic pregnancies compared with the general population. Close monitoring and support are needed from fertility specialists to increase chances of successful conception and pregnancies in this population.
