At Crinetics, we believe patient-focused drug development is vital. We value the patient’s voice and encourage patient input into our clinical development programs and beyond. We are creating new medicines that will hopefully benefit patients with various rare diseases. Patient insight is very important to us, yet equally important is that our efforts are both meaningful and make sense for patients in those communities.
One way we do this is by implementing a Patient Leadership Council (PLC) to give patients a “seat at the table.” PLC members review and discuss a variety of topics, and their input is used to help Crinetics make decisions along the pathway from molecule to medicine.
- Diagnosis with the specified rare disease, or care-partner of someone diagnosed with the disease.
- Willingness to provide open, honest, constructive feedback and input.
- Comfort speaking in a small group setting.
- Respect for fellow PLC members.
- Ability to participate via video conferencing on camera from a computer or tablet.
- United States citizens or lawful permanent residents.
- Sign and adhere to non-disclosure agreement (NDA) for information disclosed and discussed during meetings.
- Must not be a current participant in a clinical study sponsored by Crinetics to be eligible to join a Patient Leadership Council
- Agreement to not engage in an advisory role with another pharmaceutical company while serving on the Crinetics PLC. Patient Advocacy Organization Leaders may be the exception to this rule.
- Patients who are interested may self-nominate directly or through Patient Advocacy Group leaders.
- Informational interviews will be conducted with each patient or care-partner (family, spouse, friend) that has volunteered.
- A group of 8-10 PLC members will be chosen. Each PLC will be limited in size to allow for a deep discussion throughout the year.
- All interested participants will be notified of their selection for a PLC.
- Selected members will receive contracts covering their rights and obligations before their first PLC meeting participation. PLC selection will prioritize diversity and other factors that may be relevant to the drug development program.
- Participation in 2-3 PLC meetings per year. (Meetings will typically be virtual. In the event a meeting can be held in person, travel expenses will be paid by Crinetics).
- Ad hoc meetings may occur throughout the year. PLC members will be notified in advance and schedules will be coordinated for any additional meetings.
- Requires a one-year commitment, with the option to serve for up to 2 years. The anticipated time commitment will be 1.5 to 3 hours for video meetings and 0.5-1 hour for any pre-work if specified.
- Patient journey to diagnosis
- Patient treatment experience
- Clinical study feedback (protocols, patient experience, patient materials, patient reported outcomes, education, informed consent forms)
- Educational needs (materials, videos, etc.)
- Unmet needs in the specific medical condition
- Access or barriers to medical care & health insurance and other challenges
- Respect will be given to all opinions and each individual PLC member as they express their unique views. Crinetics reserves the right to remove any PLC members that cannot meet this requirement.
- Crinetics is committed to maintaining your privacy. While PLC Meetings will be recorded and transcribed, the input and content from PLC meetings will be conveyed in a de-identified manner, unless additional permissions are obtained.
- PLC applicant and member contact information will be utilized for administrative use only.
- PLC members will be compensated for their time contribution at $125.00 per hour.
- PLC members will be required to fill out IRS Form W-9, which will be provided before the first meeting.
- If required to travel, Crinetics will cover all travel-related expenses consistent with Crinetics travel standards, which will be included in the contract.