New therapies can only be made available after they've been tested in clinical trials. Get involved by researching and participating in these trials to develop new medications and treatments. You can find out about ongoing trials here and call your CF Care Center to learn more.
Stay Informed about CF Clinical Trials
To help keep the CF community informed about CF clinical trials, the Cystic Fibrosis Foundation recently launched a new online tool that generates an email alert whenever new CF clinical trials and trial results are posted. Sign up today at www.cff.org/research/ClinicalResearch/Find/ClinicalTrialAlerts/.
Important Changes Regarding Clinical Trials Compensation and SSI/Medicaid BenefitsThe Improving Access to Clinical Trials Act goes into effect April 3rd. Under the new law, the first $2000 of compensation received annually by subjects for participation in clinical trials for rare diseases like CF will no longer be considered income for purposes of determining eligibility for Supplemental Security Income and Medicaid benefits.
The Social Security Administration in collaboration with the Cystic Fibrosis Foundation has written and posted an FAQ on their website. This outlines a number of details about the bill's implementation and can be found here. In essence, the patient must submit a copy of their signed, IRB approved Informed Consent Form as proof of participation to the Social Security Administration. In the event the consent form does not state that CF is a rare disease, the Foundation has created a letter of certification for this purpose which PIs and RCs can print, sign and give to the patient along with the consent form. The letter along with a Research Coordinator IACT Guidance document will be posted on CFCRnet early next week. This topic will also be highlighted in the upcoming TDN Times.
For our patients and families - information on this bill and a link to the FAQ will be posted on the CF Foundation's website www.cff.org.
LIJ-Cohen's CF Center joins Therapeutic Development NetworkWe are very proud to announce that our CF center was chosen from a competitive applicants' pool by the national CF Foundation to join the Therapeutic Development Network (TDN). The TDN is part of a nationwide clinical trials network funded by Cystic Fibrosis Foundation Therapeutics, Inc. (CFFT) for the purpose of facilitating safe, rapid and coordinated evaluation of new treatments for cystic fibrosis. The TDN includes 77 CF clinical research centers that are geographically distributed across the United States, seven specialized laboratories and reading/interpretation centers, and a coordinating center. There has been an explosion in new potential treatments for CF in the past 5 years and joining the TDN gives our patients the chance to participate in many nationally available CF studies.
If only half of these treatments are approved, we will be much better off fighting CF, but we need YOUR participation from to see if these drugs are really effective.