Annual Update for Projects Receiving Specimens or Data

Attachment 11B.

Form Approved

OMB No. 0923-0041

Exp. Date xx/xx/201x

annual update form for projects receiving specimens and/or data

from the national als registry or biorepository

Date of update (mm/dd/yyyy): __/__/____

Project #:________

Title of study: _________________________________________________________­­­­­­­­­­­­­________________

_____________________________________________________________________________________

Principal Investigator: ___________________________________________________________________

Has PI changed since last update?

No Yes, effective date (mm/dd/yyyy): __/__/____

Names of all current co-investigators:

_____________________________________________________________________________________

_____________________________________________________________________________________

NOTE: If this project required IRB approval, please attach copy of the latest continuation approval.

Project Status (indicate project status:

Not yet begun

In progress

Completed

Project suspended or terminated (no longer plan to pursue this research project)

Not yet begun? Explain briefly and indicate anticipated start date.

____________________________________________________________________________________

____________________________________________________________________________________

In progress? Summarize briefly (2-3 sentences) what has been done in the past year.

____________________________________________________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

Completed? Briefly summarize the results and conclusions. ____________________________________________________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

____________________________________________________________________________________

Project suspended or terminated? Summarize briefly.

____________________________________________________________________________________

____________________________________________________________________________________

CDC estimates the average public reporting burden for this collection of information as 15 minutes per response, including the time for reviewing instructions, searching existing data/information sources, gathering and maintaining the data/information needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Information Collection Review Office, 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0923-0041).

For studies that have been completed, suspended, or terminated, have you contacted ATSDR for instructions on what to do with the remaining samples and data?

	Yes
	No

Have you had any abstracts or articles published since the last update?

	Yes
	No

If yes, list the citation for abstracts or articles published. Also include the meeting name and location for presentations.

____________________________________________________________________________________

____________________________________________________________________________________

For those who received samples from the biorepository.

To help us provide better services and make sure the samples you need are available at a later date, please answer the following question:

Do you anticipate using ALS specimens in the coming year?  Yes  No

If so, which types of samples will you need? (Select all that apply)

Blood

Plasma

Serum

Urine

RNA

DNA

Hair

Nails

Brain

Spinal cord

Cerebral spinal fluid

Muscle

Primary dermal fibroblasts

Bone

Unsure

Approximately how many samples will you need?

0 – 10

11 – 50

50 – 100

100 – 200

200 – 300

> 300

Unsure

What types of technology do you use in your research? (Select all that apply)

RNA isolation

DNA isolation

Protein isolation

Laser microdissection

Immunohistochemistry

RT/PCR

RNA amplification

Microarray gene expression profiling

PCR

FISH/CGH

Proteomics

Gene mapping/SNP analysis

Mutation analysis/sequencing

Enzymology

Immunoblot/immunoprecipitation

Pharmacogenomics

Pharmacokinectics

Serology/antibody studies

Biomarker analysis

NOTE: All project updates are due by the anniversary of your approval. Any projects either actively terminated or not updated by the deadline will have the project status changed to “terminated”. If you wish to continue the project, a new proposal would be required. New proposals by other researchers may be submitted on these topics.

A final update for each project should be submitted when the project is complete. The final update should include citations for all published manuscripts and abstracts based on the project.