Coriell Biobanking to support research

Access to CCDS biosamples (i.e. blood, skin cells) is one of the key needs of the research community. The Association for Creatine Deficiencies is excited to partner with Coriell, a world leader in biobanking (the collection of biosamples for research purposes) to collect and store cells from patients with CCDS and their families in support of research. Watch an informative webinar about what this means and how to participate by visiting the blog post, “Coriell Biobanking Opportunity.”

CreatineInfo Patient Registry and Patient-Reported Natural History Study

The CreatineInfo Registry is a Patient-reported Registry and Natural History Study created by ACD and hosted by NORD for furthering research and empowering the Cerebral Creatine Deficiency Syndromes (CCDS) community. Join the registry at creatineinfo.iamrare.org – For more information visit creatineinfo.org/creatineinfo-registry or contact registry@creatineinfo.org

Information from the NIH Recruitment Flyer:

“If your son took part in the Vigilan study, we would like your help.

CTD patients appear to have similar head and facial features and researchers at the NIH would like to investigate this further. The results of this type of study may help researchers better understand CTD as well as clinicians recognize and diagnose CTD patients more quickly.

Participation is as simple as consenting to the study protocol and providing photos of your son for inclusion in the study.

For more information, please contact:
john.perreault@nih.gov
(301) 827-9235
NIH IRB# 0001074”