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We are a charity funding research to cure primary ciliary dyskinesia.
Primary Ciliary Dyskinesia
PCD
Primary Ciliary Dyskinesia (PCD) is a rare inherited condition that affects 1 in 7,500 people.
Motile cilia are the microscopic hairs that beat in the airways and sinuses, clearing out secretions and infections. In PCD, the cilia are abnormal and unable to move in the usual way, such that secretions and infections affect the lungs, sinuses, ears and nose. Cilia are also important for the propulsion of sperm, so fertility may be affected too.
At present the only treatment for PCD is chest physiotherapy to try to prevent and slow lung function decline. PCD is a life altering and life shortening condition, and children with PCD have been found to have worse lung function than those with cystic fibrosis (CF). This will mean some people will need a lung-transplant.
There are no dedicated treatments for PCD, instead current management has been borrowed from experience with people who have CF. At present the only treatment for PCD is chest physiotherapy to try to slow the decline in lung function. However, it is still unknown if this is able to reduce lung damage.
Whereas CF has had an active program of research leading to breakthrough drugs that almost cure CF, sadly these drugs are not suitable for people with PCD. Our aim is to improve treatment options for people with PCD, by funding important and potentially life-saving research.
We receive no governmental funding to support our research and rely entirely on the support of the general public to continue to funding pioneering research. If you would like to learn more about our research process, please visit our ‘For Researchers‘ section.
Find out more about the symptoms of PCD ‘here‘.
Research We Are Funding
Since PCD Research was founded in January 2022, combined with two Medical Research Council (MRC) collaborations, the charity has raised over £300,000, and we look forward to building on this success in the future.
Learn more about the exciting research we are funding and future grant opportunities.
Meet the families affected by PCD
While children and adults with PCD may look healthy, unfortunately PCD is a progressive disease, where lung function declines over time. Children with PCD in the UK have worse lung function than children with Cystic Fibrosis, but are unable to access the same standard of care. We have asked NHS England to review this inequity of service provision.
People with PCD face huge challenges from the disease, the treatment burden of daily chest physiotherapy, and frequent courses of antibiotics in an attempt to reduce the rate of lung function decline.
Some people with PCD will need lung transplants.
Scientific Advisory Panel
To ensure we have a robust process to award grants, we have have global Scientific Advisory Panel (SAP). The SAP comprises of world experts in PCD, bronchiectasis, gene augmentation and gene editing.
For more information about all the SAP members, please see the link below.
Getting Cilia Moving
Find out more about our mission, research strategy, roadmap for getting cilia moving and much more by downloading our guide to PCD Research below.
Please contact us for more info.
Member of the Association of Medical Research Charities
AMRC membership is the hallmark of quality research funding, and recognises the processes we have put in place to ensure we are funding research of the highest standards.
© PCD Research Registered Charity Number 1197528
PCDresearch.org 