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CIBMTR Corporate Members can request data using the online Corporate Member Information Request Form.

To whom it may concern,

Today (December 8th, 2015) I reached out to you concerning participating in our short survey (1-2 minutes) we sent out to gather more knowledge about your database “CIBMTR”.

In short, we are conducting a research to identify relevant organisations that collect real world data (RWD), and that would be interested to collaborate with a biotechnology company. By means of secondary research, we discovered that you are collecting data on multiple diseases in your database.

We would highly value your input in better understanding the type of data your organisation collects.

We would appreciate it if you could take 1-2 minutes to answer our questions related to your database.

1. Would you consider collaborating with a third party for research purposes?

2. Do you have data on patients with a hemoglobinopathy diagnosis?
a. If yes, do you capture data on patients with beta-thalassemia?
i. If yes, how many patients with beta-thalassemia does the database contain?
b. If yes, do you capture data on patients with beta-thalassemia major/ transfusion dependent beta-thalassemia?
i. If yes, how many patients with beta-thalassemia major/ transfusion dependent beta-thalassemia does the database contain?

3. Do you capture data on disease characteristics…
a. Severity of the disease? (e.g. transfusion dependent, beta-thalassemia major, intermedia and minor)
b. Lab parameters? (e.g. total haemoglobin levels, iron overload)
c. Genetic mutations causing beta-thalassemia?

4. Do you capture data on therapy…
a. Therapies and procedures? (e.g. iron chelation)
b. Gene therapy?
c. Blood transfusions?
d. Bone marrow transplantation?

5. Do you capture data on health related outcomes…
a. Mortality?
b. Therapy-related adverse events? (type, start & end date, grade)
c. Quality of life of patients?

6. Do you capture data on incidence of complications from living with beta-thalassemia? (e.g. liver dysfunction, cardiac dysfunction, endocrinopathies)

7. Do you capture health resource utilization?

The easiest way to participate is to directly respond to this e-mail, tick the boxes, and fill in the free text fields in the table above. We would be very grateful if you could complete and return the survey as soon as possible.

Please do not hesitate to contact us for any further questions or information.

Thank you in advance for your time and we look forward hearing from you.

Kind regards,

Niels Bossers

Seeking a listing of the latest year (2013) of available sales data, the total number of TOTAL BMTs performed in the US, ideally broken out by state and hospital within each state.

This is urgent, so please send me something as soon as possible.  Thank you.

I am requesting access to data in support of developing a forecast model for Acute and Chronic GVHD patients for a potential new product in development for treating Acute and Chronic GVHD.

We would like to know the survival and mortality rate of BMT in AML (AML&MDS) patients. Time periods for survival may be survival at 3 months, 6 months and 1 year by fine age groups (10 years groups) and subgroups including:
Type of conditioning, patient’s situation at the time of BMT with regard to first time/remission/recurrence/primary refractory, type of AML (primary vs secondary and MDS). Patients with first occurrence of disease (in first CR or CR1) and conditioning intensity.
Also relative survival or hazard ratio by prognostic patient characteristics such as remission/refractory and primary/secondary AML, and conditioning intensity.
Also if possible, the rate of hepatotoxicity and more specifically, incidence of hyper bilirubinemia and Veno-Occlusive Disease of the Liver (Hepatic sinusoidal obstruction syndrome (SOS) by prognostic factors above.
Thanks

We are a startup developing NK cell therapeutics for hematological oncology purposes.

We would like to query the registry for retrospective data on GI side effects/ mucositis post-transplant for Evomela vs other versions of melphalan.

Erectile dysfunction (ED) occurs when a man has consistent and repeated problems sustaining an erection. Without treatment, ED can make sexual intercourse difficult. The problem is reported by 1 in 5 men and that number increases with age.
Erectile dysfunction (impotence) is the inability to get and keep an erection firm enough for sex.
Having erection trouble from time to time isn't necessarily a cause for concern. If erectile dysfunction is an ongoing issue, however, it can cause stress, affect your self-confidence and contribute to relationship problems. Problems getting or keeping an erection can also be a sign of an underlying health condition that needs treatment and a risk factor for heart disease.
 
If you're concerned about erectile dysfunction, talk to your doctor — even if you're embarrassed. Sometimes, treating an underlying condition is enough to reverse erectile dysfunction. In other cases, medications or other direct treatments might be needed.

We hope to understand the incidence and overall survival outcomes for patients who develop PTLD after alloHCT

Describe patient and clinical characteristics of the MM patients who receive ASCT in the US from 2012-2016. Characterize induction treatment regimens in MM patients undergoing ASCT by year (2012-2016). Estimate disease related outcomes by year and by induction regimens during follow-up including time to disease progression and overall survival

Development of NK cell therapies

North American Survival Data for 2015 & 2016 separated by Autologous and Allogeneic related, and Allogeneic unrelated for both adult and pediatric.

I am testing this page as we've received reports of external users receiving an error when attempting to submit a request this way.

Looking to understand the treatment characteristics for multiple myeloma patients who receive a stem cell transplant.
We would like to understand the pricing implications of various outcomes requested, disease states and history.

Beta-thalassemia allo-HSCT outcomes

Request for patient level dataset used in Leslie Kean's protocol CIBMTR SC16-04c.
Data will be combined into a single SDTM data set and a single ADAM data set for Study GVH1201. 
Combined Datasets will be used in FDA submission