Clinical Signs of NCBRS in Adult Patients
Prof. Dr. Dagmar Wieczorek and Ariane Schmetz from the Institute of Human Genetics in Dusseldorf, Germany are conducting a study on the "CLINICAL SIGNS OF NCBRS IN ADULT PATIENTS".
This study will take around one hour of your time to completion of a survey, but it will have great benefits. Being able to map out all the clinical features in adulthood helps raise awareness and also helps develop appropriate improved care plans for younger patients to prevent certain issues through earlier awareness and monitoring.
The data from the study will be published (but with anonymised data (no one will be identified) to help raise awareness among physicians looking after patients with NCBRS.
You can take part in the study from anywhere around the world. The more patients we get into the study, the more valid/representative the results/analysis will be.
Currently the questionnaire and form/s are available in English, French and German.
To participate in this study please email Ariane Schmetz - Study Lead (email address below👇) who will register you to participate and send you the relevant questionnaire and form/s.
If you have any questions beforehand, please send Ariane an email and she will be more than happy to answer your questions.
This study will take around one hour of your time to completion of a survey, but it will have great benefits. Being able to map out all the clinical features in adulthood helps raise awareness and also helps develop appropriate improved care plans for younger patients to prevent certain issues through earlier awareness and monitoring.
The data from the study will be published (but with anonymised data (no one will be identified) to help raise awareness among physicians looking after patients with NCBRS.
You can take part in the study from anywhere around the world. The more patients we get into the study, the more valid/representative the results/analysis will be.
Currently the questionnaire and form/s are available in English, French and German.
To participate in this study please email Ariane Schmetz - Study Lead (email address below👇) who will register you to participate and send you the relevant questionnaire and form/s.
If you have any questions beforehand, please send Ariane an email and she will be more than happy to answer your questions.
We hope you will get involved with this study and help us to better understand NCBRS in adult patients, which in turn will help our younger patients as they grow. Thank you for your continued support.
“ALONE WE’RE RARE, TOGETHER WE ARE STRONG”
“ALONE WE’RE RARE, TOGETHER WE ARE STRONG”