About the Netherlands Brain Bank
The Netherlands Brain Bank (NBB) collects brain tissue from deceased persons who registered as a brain donor during life. People with a neurological or psychiatric disorder, as well as healthy persons, can register as a brain donor. The brain tissue is collected as soon as possible after the death of a donor. The NBB then makes the tissue available to researchers worldwide, along with extensive clinical and neuropathological data. Research using this tissue leads to more insight in how the brain works. This way the NBB aims to facilitate cutting edge human brain research in order to find the causes and solutions for neurological and psychiatric disorders. For more information, go to www.brainbank.nl.
About PLN Foundation
The PLN Foundation was established in 2012 by and for people who are directly and indirectly affected by the consequences of the R14del mutation. The primary goal of the PLN Foundation is to find a safe and affordable treatment method. We also are committed to make PLN more known and open to discussion. We actively initiate, stimulate and finance research in order to find a cure. PLN is an orphan disease. There are currently more than 1,500 carriers known in the Netherlands, but through research we know that there are at least 10 to 14 thousand carriers.
More information: www.plnheart.org
Castor is a leading provider of decentralized and hybrid clinical trial solutions to democratize research. With the highest-rated eClinical platform for decentralized and hybrid clinical trials, Castor’s plug-and-play platform offers rapid deployment at scale, enabling researchers to create a trial in a matter of clicks, with easy enrollment, eConsent, and real-world data capture. Castor is bringing human-centered design to the clinical trial process, from recruitment to analysis, and improving the quality, security, and reusability of data for researchers worldwide. For more information, visit www.castoredc.com. Follow us on Twitter at @castor.
Conducting scientific studies can be very challenging, in particular if you take into account all relevant privacy and security related laws and guidelines. Ldot is a web-based research workflow support system that is used to improve scientific data quality by making the logistics of conducting scientific research secure and easy. Ldot supports the study workflow by indicating which actions should be performed for which study subject at what moment in time. Researcher intitiated actions, in combination with an expanding amount of automated actions and connections with data collection tools (e.g. Castor, Qualtrics, RedCap, ZorgTTP, etc.) ensures an easy and standardised conduction of the actions described in the study protocol and a good overview of the progress. Besides supporting the study workflow, Ldot ensures a secure and GDPR-complient data storage by storing personal information separate from research data. The application is build and maintained by GCP qualified software developers from MEMIC, the center for data and information management at the Faculty of Health, Medicine and Life Sciences of Maastricht University.
More information about Ldot can be found at www.ldot.nl.
About Hart4Onderzoek (Heart4Research)
Non-profit foundation Hart4Onderzoek (Heart4Research) is a patient driven platform in the Netherlands that aims to bridge the gap between patients with rare (genetic or congenital) heart diseases and (international) scientific researchers.The charity collects money via (crowd)funding. The focus of Hart4Onderzoek lies on research proposals and ideas of young investigators and small-scale research projects. Patients and researchers cooperate in innovative medical science projects and aim to improve the quality of life of patients with genetic and congenital heart diseases.The board of Hart4Onderzoek also provides educational services and lectures for (bio)medical students, nurses, cardiologists and other healthcare professionals in the field of cardiovascular & congenital diseases or exercise physiology.
For more information about Hart4Onderzoek, please visit the website: www.hart4onderzoek.nl
LMNA related heart disease? Please join us at lmnacardiac.org to take part in our network of patients and specialists.