Sample letter: Tissue-request inquiry
Dear [ NAME OF CONTACT AT THE ADRC ]:
I am writing to inquire about a potential tissue request for a study on biochemical and genetic factors influencing neurodegenerative changes in the oldest old. Dr. [ COLLABORATOR'S NAME, IF ANY ] and I used the National Alzheimer’s Coordinating Center (NACC) database to identify cases of interest — a number of which are from your center. I am seeking frontal cortex and cerebellum for biochemical analysis (preferably fresh frozen, but formalin fixed tissue is acceptable). Other neocortical regions are potentially suitable alternatives. Please note that this is neither a NACC request nor a NACC initiative, and your participation is entirely voluntary. We will acknowledge participants in the manuscript and will abide by all MTAs. If you are willing to receive a list of subjects for whom we seek tissue, please reply to this e-mail.
Thank you for your consideration.
Sample letter: Inquiry about cognitive test data available at an ADRC
Dear [ NAME OF CONTACT AT ADRC ]:
We are currently using the data from the National Alzheimer’s Coordinating Center (NACC) to study the accuracy of diagnosis and the prognostic implications of Parkinsonism in dementia.
Our preliminary data analysis shows that there are patients with a first-visit diagnosis of probable Alzheimer’s disease with mild to moderate cognitive deficits (based on MMSE), who have high United Parkinson’s Disease Rating Scale (UPDRS) scores. Based on our methods, those subjects are outliers. However, to complete the analysis adequately, we need data from you that NACC does not have. For the subjects involved, we would ask you to collect additional data by chart review or from your own data base. NACC has agreed to act an intermediary in this process to avoid any breach of HIPAA rules (NACC will contact you to explain the procedure, if you agree to participate).
Requested data collection: On the pages below, you will find a one-page checklist on which you will be asked to mark the presumed etiology for the EPS (items with UPDRS scores > 2). Please make every effort to fill this page out for each "outlier" case seen at your center. The following pages allow for more detailed narrative information, and its use is encouraged but optional.
Thank you in advance for your efforts. Please note that this is neither a NACC request nor a NACC initiative, and your participation is entirely voluntary. Please let us and NACC know as soon as possible whether you are willing to participate. Once you have notified us of your participation, we will send you the list of NACCIDs to collect data on. We will certainly acknowledge the responding centers and will be generous in offering co-authorships for those responders who influence the content of the manuscript(s) in any way.