About the Registry FAQ

ALKConnect is a registry that collects information from people living with anaplastic lymphoma kinase positive (ALK+), non-small cell lung cancer (NSCLC). The information will be shared with the ALK+ NSCLC community. By providing drug developers, researchers, clinicians, patients, advocacy organizations, caregivers and others with a database of detailed de-identified medical information about people diagnosed with a specific disease, registries are a valuable tool in better understanding illnesses like ALK+ NSCLC.

Be able to assess real-world patient experience and outcomes including quality of life, treatment journey, and satisfaction.

Gain a better understanding of treatment satisfaction in patient populations that may be broader than the controlled clinical trials.

Identify unmet needs to help develop new treatment options.

Specifically, ALKConnect is designed to:

  • Study trends and address specific questions about ALK+ NSCLC
  • Gain insights into the impact of ALK+ NSCLC on patients over time

If you join ALKConnect, you will be asked to complete surveys about your experience living with anaplastic lymphoma kinase positive (ALK+), non-small cell lung cancer (NSCLC). You also have the opportunity to share medical records that describe your diagnosis, treatments, symptoms and changes in the disease.  Over time, you may occasionally be asked additional survey questions and to update your information.

People with a diagnosis of anaplastic lymphoma kinase positive (ALK+), non-small cell lung cancer (NSCLC) are invited to join the registry. To enroll, you must meet the following criteria:

  • Have ALK+ NSCLC, be age 18 or older and be able to make your own medical decisions.
  • A resident of the United States, which includes those living in U.S. territories such as Puerto Rico.

By participating in ALKConnect, there are many benefits to joining the registry and as a member, these include:

  • Learning about experiences from other patients with ALK+ NSCLC.
  • Discovering new clinical trials and research studies.
  • Helping researchers better understand life with ALK+ NSCLC.

Join today at www.ALKconnect.com and together, we can make a difference for the anaplastic lymphoma kinase positive (ALK+), non-small cell lung cancer (NSCLC) community.

The medical community, including drug developers, researchers, clinicians and advocacy organizations engaged in lung cancer research can request access to the registry. All information in the registry is de-identified, meaning information that could be used to personally identify you has been removed. As a participant, you have immediate access to the survey responses of your peers.

Please email PatientCrossroads at This email address is being protected from spambots. You need JavaScript enabled to view it. if you have questions about the registry or if you have difficulty enrolling.

Yes. When you submit information to the ALKConnect registry, it will be stored and maintained in a secure, password-protected database. Third parties will not be given access to any identifiable patient information, unless you specifically agree to be contacted by them. The registry adheres to all applicable national, state and local personal health data protection standards. This is consistent with all registries maintained by PatientCrossroads.

Yes. Participation in the registry is entirely up to you. You can withdraw from it at any point for any reason.

Yes. ALKConnect was developed for people who are residents of the United States. However, you can let PatientCrossroads know if you would like to be contacted if we launch a survey in your country. If you are not a resident of the United States and interested in participating in ALKConnect, click here to send an email: This email address is being protected from spambots. You need JavaScript enabled to view it.. At this time, there is no commitment to launching ALKConnect outside of the United States.

Takeda Pharmaceutical Company Limited is a global, research and development-driven pharmaceutical company committed to bringing better health and a brighter future to patients by translating science into life-changing medicines.  Takeda focuses its R&D efforts on oncology, gastroenterology and central nervous system therapeutic areas plus vaccines.  More than 30,000 Takeda employees are committed to improving quality of life for patients, working with our partners in health care in more than 70 countries.  For more information, visit http://www.takeda.com/news.

PatientCrossroads is a leader in building web-based patient registries designed to advance research and connect patients with researchers, physicians, patient advocacy groups and industry organizations working to understand or treat specific diseases and conditions. PatientCrossroads amplifies the voice of patients to help drug developers find better treatments for diseases. We deliver patient insights faster, and for far less, than traditional registries and CRO organizations.