Paroxysmal Nocturnal Hemoglobinuria Clinical Trials

Not all trials are listed on www.ClinicalTrials.gov. The investigators may have chosen not to register the trial, or the study may not be eligible to be listed on ClinicalTrials.gov. If the study has not, for example, been approved by a human subject review board, it cannot be posted. Some trials are not listed because the investigators are not planning to publish the research findings, so you can ask the study coordinator why the study has not been included on ClinicalTrials.gov before you give your consent to participate.

The information on the studies linked below is provided strictly as a resource, not as an endorsement of any given treatment, doctor, or medical center.

Remember, before you sign a consent form, Clinical Trials Explained can help you understand the potential risks and benefits of a clinical trial. You can also contact the AA&MDSIF staff to discuss any questions you have at clinicaltrials@aamds.org or by calling the office at 301.279.7202 or 800.747.2820.

^{Last Modified: February 2009}

Cleveland Clinic Foundation

PNH Patient Registry

Cleveland, Ohio

The purpose of the PNH Patient Study is to assess the natural history of PNH, provide real-life data characterizing clinical and patient reported outcomes associated with numerous PNH treatment regimens, and raise PNH disease and awareness in the medical community and patient/potential patient populations. Results from the Study should allow the medical community and the Study Sponsor to gain a better understanding of PNH and the real-world outcomes associated with it.

For more information contact Dr. J. Maciejewski at 216.445.5962 and visit http://www.pnhregistry.org/.

For patients with: PNH

Link: http://www.pnhregistry.org/

Updated: December 11, 2007

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