Tissue location request
To request information from the NACC database on the location of various tissues, please provide the information requested below Drawing mainly from data in NACC's NP Data Set, NACC will search for Alzheimer's Disease Centers that may have your target tissues, and then put you in touch with those Centers.
Steps for requesting tissue from Centers:
- Work with NACC to develop a list of subjects who may have specimens available at Centers (based on your eligibility criteria). NACC will provide sample-size tables by Center, focusing on the five or 10 Centers that have the most specimens of interest. This will give you a rough estimate of the number of subjects with specimens at each Center. More specific information on the samples (e.g., brain tissue region available) can be obtained once you contact the individual Centers.
- Use the list NACC develops to identify the ADRCs that you would like to contact to request specimens.
- Once you have determined the ADRCs you would like to contact, use the to draft a letter to the Center(s), explaining your proposed study. Your letter must include a statement similar to the following: "Please note that this is neither a NACC request nor a NACC initiative, and your participation is entirely voluntary." NACC will review your letter, and then we will provide you with contact information for each Center.
- Email the approved letter to each Center. If the Center agrees to participate, you email the list of NACCIDs of interest to the Center. If at any point either you or the Center needs more information about a given subject, contact NACC for assistance.
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.
Sincerely,
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.
Sincerely,