The NDRI is the National Disease Research Interchange, an organization specializing in getting tissue from patients to researchers. This NDRI organizes the procurement, shipping and distribution of tissue from patients to researchers. It is a complicated business, as the NDRI needs to coordinate this with doctors, pathologists, hospital ethics boards, patients, patient families, researchers, research laboratories, couriers and clinicians. To be able to really make sure tissue is maximally utilized, we need an organization like the NDRI -- professional, neutral and effective. They have a 24-hour telephone line you can call if you know you are going to have a procedure. This number is on the information pack that is sent with the consent forms.

Researchers contact the NDRI in advance and say what tissue they need and what studies they need tissue for. In the case of LAM, tissue will only go to researchers working on LAM. The NDRI will not give LAM tissue away for any purpose other than to advance LAM research. Tissue will only go out to qualified researchers. We can be sure that no tissue donated to the NDRI will be wasted. The NDRI then matches certain types of tissue (fresh/ preserved, lung or other tissue etc.) with the list of researchers waiting for tissue. They distribute the tissue fairly and transparently, according to what the researchers need. They then contact the researchers directly (who will often come in to their lab on a weekend or evening to receive tissue) to arrange delivery.

The patient consent forms contain a list of many body parts. You need to circle every part you agree to donate to research separately. This is because not everyone wants to donate everything (like in organ donation) but because tissues that you may not have known were valuable (and also from fluids) can be used for capturing LAM cells circulating through the body. These cells can be found in many organs other than the lungs. For example, researchers are now starting to look at the role the uterus plays in LAM. We know that LAM cells also circulate in blood, urine, lymph nodes and lymphatics and can therefore be found throughout in the body. That is why the consent form covers many organs and body parts, not just lungs.

It is impossible to overemphasize the importance that tissue plays in research. The researchers' hands are tied if they do not have LAM tissue to work with. The scarcity of tissue is a major obstacle for progress in finding an effective treatment for LAM. So, if you would like to help and haven't registered with the NDRI yet, please go to this webpage and click on 'register to donate' (you only need to fill in your name and address, and it only takes a few minutes):

http://www.ndriresource.org/Donor_Programs/Individual_Donors/37/

The NDRI will then post an information pack with the consent forms to you, which you need to fill in, sign and post back to them.

If you have any more questions, please don't hesitate to contact Tissue@LAMTreatmentAlliance.org

NDRI (National Disease Research Interchange) is a non-profit organization with 25 years experience in procuring, storing and distributing human cells, tissues and organs to scientists (www.ndriresource.org). NDRI receives funding for their Rare Disease program from the National Institutes of Health and support from the NIH Office of Rare Diseases and from organizations including the LAM Treatment Alliance. The LAM program at the NDRI represents a component of the NDRI's strong commitment to advancing rare disease research. The LAM tissue procurement, banking and distribution program is administered through the NDRI in order to provide researchers with the materials that are vital to the pursuit of an effective treatment for Lymphangioleiomyomatosis (LAM). Importantly, the NDRI is committed to doing their work in a time-sensitive way. Our partnership with the NDRI began in March 2007. Also, effective March 1st 2007, the LAM Tissue Repository linked to a now closed LAM registry that was previously managed by NHLBI, has been transferred to NDRI.

Donating tissues has been set-up to be as simple and sensitive to donor and donor families needs as possible. Potential donors receive a packet of information describing the donation process and containing consent forms. The first donation option is to give consented tissue samples from surgery (e.g. biopsy or explanted organ(s)). In conjugation with this surgical donation could be a donation of a blood sample. All you have to do is request a NDRI blood kit. Next, you need to get less than an ounce of blood drawn from your local doctor and then send your samples back to NDRI in a postage-paid envelope. The final type of donation to consider is when a loved one passes away. If you feel that this is what you would like to do, then a consent form can be filled out at any time and sent back to NDRI. When the time comes your family will need to contact NDRI, who are very respectful towards the donor families' wishes regarding funeral arrangements. If a family member passes without signing a consent form but their family feels they would have wanted to be a donor, the family can sign the consent form. All types of donation are at no cost to the donor, except possibly the cost of the blood draw if you would like to donate blood.

NDRI follows strict governmental regulations and guidelines regarding donor consent and confidentiality; tissue samples are only provided to approved biomedical researchers who have proven that they have the resources to complete the research described in their applications. NDRI matches donors with appropriate requests and then sends the tissues directly to that researcher. Your personal details remain strictly confidential and no personal donor information is given to the scientists.

To receive a packet of information on LAM tissue donation, please contact a Rare Disease Coordinator at raredisease@ndriresource.org, or 1-800-222-6374. You may also contact the LAM Treatment Alliance at (617)460-7339 or tissue@LAMTreatmentAlliance.org .

To register to be a donor online, please go to http://www.ndriresource.org/Donor_Programs/Individual_Donors/37/ THANK YOU FOR HELPING TO MAKE PROGRESS IN LIFE-SAVING RESEARCH POSSIBLE.