1. Please download the main consent form for participation in any of our BIDMC sponsored studies. Please have each adult participant sign the consent form. Older children between the ages of 7-17 years old are asked to give informed assent and also sign this assent form. A parent/guardian must also sign the main consent on behalf of each child that participates. There is a consent form summary page that many people find helpful as they are reviewing the consent form.
2. Please download the questionnaire and have each participant fill out the information to the best of his/her ability. Alternatively, you can fill out the questionnaire online by visiting this website: http://goo.gl/forms/D87OWMIqbP
3. Please send us a copy of any relevant kidney biopsy (if applicable) and any imaging records that you may have. We also like to view records of any past genetic testing that has been done, urine studies, or other relevant medical records. Please download our medical record release forms on each participant, and return the signed forms to us so that we can access these records. If you are a patient who has already given us this in the past, please download and sign a new one so that we have your most recent care provider on file.
Nephrologist form (Medical record release form to access records from the nephrologist or kidney care provider)
Primary care provider form (Medical record release form to access records from the primary care provider)
You can scan this paperwork and send back to us at aknob@bidmc.harvard.edu or you can fax it to us at 617-667-0495 to the attention of our clinical research coordinator, Andrea Knob.
Sample collection
Saliva Samples:
For studies requiring saliva samples, we will provide specimen containers. Click here for an instructional video that will help you to obtain an adequate sample and avoid a request for recollection. If you have trouble giving a saliva sample, you can always give a blood sample instead. There is no need to refrigerate the saliva sample once completed. Please make sure to label it with the correct name and date of birth so we know whose sample it is once we receive it. We ask that you place the saliva sample in the biohazard bag provided in your kit before shipping.
Download instructions for submitting saliva sample (most common).
Saliva swab instructions for those needing a "swab style" collection kit (less common)
Blood Samples:
Sometimes it is easier to obtain a blood sample, especially if the participant is already having their blood drawn or if a participant is in clinic and it is more convenient to obtain a blood sample rather than to wait for us to mail a kit. In addition, some studies require blood rather than saliva, which we will tell you in advance. For those sending a blood sample we prefer to receive 2 yellow or purple top tubes (~17mL total) from adult subjects; one tube (8.5mL) from children 12 and under; and one small pediatric size tube from very small children. In small children, blood should be obtained only at a time when blood would be obtained for regular clinical care. On occasion we may request a third tube.
Download instructions on submitting a blood sample.
Study participants can also download tips for finding someone to draw blood.
Urine Samples
In some cases, we may ask for a urine sample in order to check the urine for protein or blood. We can provide the specimen containers for urine collection. If it a participant is unable to give a urine sample, we may ask for copies of previous urinalysis reports.
Download instructions for collecting and submitting a urine sample.
Shipping
Please ship all paperwork and samples to the address below. We can send approved shipping materials if necessary.
Attn: Andrea Knob, MS
Dr. Martin Pollak
Research North 304
99 Brookline Avenue
Boston, MA 02215 USA
Phone: 617-667-0461
Fax: 617-667-0495
*For international collaborators or participants who require assistance with UPS shipping paperwork or customs paperwork, or to schedule a UPS delivery pickup, don't hesitate to contact Andrea Knob at the contact information listed below.
Questions?
Please contact Andrea Knob, MS at 617-667-0467 or aknob@bidmc.harvard.edu for all enrollment questions.