|BESTCilia:European PCD Grant Kicks into High Gear!|
The European Union is funding the Better Experimental Screening and Treatment for Primary Ciliary Dyskinesia (‘BESTCilia’) initiative, an international collaboration aimed at creating standards for diagnosis and care that can be implemented across Europe and shared with collaborators in other countries.
This initiative is headed by Dr. Heymut Omran from Muenster, Germany and includes partners from across Europe, the UK and North America, including experts from the UK, the US, Denmark, the Netherlands, Cyprus, Greece, Poland and Switzerland . Dr. Margaret Leigh, a PCD expert from the University of North Carolina, Chapel Hill, is representing US interests. Additionally, patient advocacy groups, including the US PCD Foundation and groups from the UK, Germany and Switzerland are active participants in this grant initiative and provide input from the patient perspective related to needs and priorities of the international PCD patient community.
On March 1 and 2nd, Michele Manion from the US PCD Foundation attended the inaugural ‘Kick-off’ Meeting for the BESTCilia group in Limassol, Cyprus. The BESTCilia grant is divided into seven ‘work packages,’ each with specific aims related to the broad goal of improving screening and treatment for PCD. The PCDF is participating in three packages:
1. International PCD patient registry (development and implementation)
2. Health-related quality of life tool (development and validation)
3. Dissemination of information related to BESTcilia activities
Other work packages include an ambitious effort to collect and organize anonymous data already captured at PCD centers around the world and to launch the first-ever clinical trial of a drug (azithromycin) in PCD!
It is exciting to see the goals of individual groups coalesce in an international effort on behalf of PCD. Given that each country has a relatively small patient population, the only way we can have the numbers needed to effectively power future clinical trials is to cooperate and we are fortunate in having such fantastic international partners as we move PCD science forward!
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