Your Voice

The icMDS-PRO Survey Project is led by a group of international investigators, including members of the MDS Foundation’s Medical and Scientific Advisory Board. The goal is to better understand what matters most to patients when taking part in MDS clinical trials.

The survey takes about 10 minutes to complete.
Your answers will help researchers know which parts of care and treatment have the biggest impact on patients’ lives, and what should be measured in future trials.

Healthlink Solutions is seeking 35 US-based MDS patients, diagnosed within the last 10 years to take part in a 30-minute online survey with $55 compensation.

They are looking for:
- 10 Watch and Wait patients
- 10 to 15 Patients on first-line treatment
- 10 to 15 Patients on second or later-line treatment
- 5 to 10 Patients who have used Reblozyl 

If this is something you or someone you know might be interested in, please feel free to reach out to Chiarra at Chiarrarohr@healthlinksolution.org or 858-805-5009-call or text is fine (EST).

Healthlink Solutions is looking for 10 low-intermediate risk, US-based MDS patients who are currently taking or have previously taken Reblozyl.

This study involves a 60-minute web interview with $150 compensation.

If this is something you or someone you know might be interested in, please feel free to reach out to Chiarra at Chiarrarohr@healthlinksolution.org or 858-805-5009-call or text is fine (EST).

The MDS Foundation would like to understand more about you (the MDS patient and the MDS caregiver), your health, and your educational and support needs.

Have you or a loved one been diagnosed with Myelodysplastic Syndrome (MDS)? You may qualify to take part in a research study sharing your experiences through a web-assisted phone interview.

Patients will join a 90-minute session ($120 compensation), and caregivers will join a 60-minute session ($80 compensation).

Your insights will help improve understanding and support for people living with MDS.

If you or someone you care for has received treatment for Myelodysplastic Syndromes (MDS), you may be eligible to take part in a quick 20-minute survey and receive $55 as a thank you.

US residents who have been treated with Epogen, Procrit, Aranesp, or Retacrit may qualify (please note that transfusions alone do not meet eligibility criteria). Your insights will help improve care for the MDS community.

To see if you qualify or to learn more:
Call 858-805-5009
Email chiarraorhr@healthlinksolution.org

Clarivate (a research consultancy) is looking for US-based adults with transfusion-dependent, lower-risk myelodysplastic syndromes (MDS), as well as their caregivers, to take part in an online interview. The purpose of the interview is to explore your experience of living with MDS and associated transfusions.

Participants will receive:
Patients: $120 for a 90-minute interview, plus $40 for confirming diagnosis
Caregivers: $80 for a 60-minute interview, plus $40 for confirming the patient’s diagnosis

If you are interested in taking part, or would like more information about the study, please contact: j.matthews@meditalk.world

This global non-profit network includes 196 locations, such as CSC and Gilda's Club centers, hospital partnerships, and satellites. They offer over $50 million in free support services to patients and families. The network also conducts research on cancer patients' emotional, psychological, and financial journeys and advocates for supportive policies at all government levels.

Rare Patient Voice, LLC connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies. These include surveys and phone interviews, online bulletin boards, focus groups, clinical trials, and more.

The "Smarter. Stronger. Together." initiative by the MDS Foundation offers essential resources for patients with Myelodysplastic Syndromes (MDS). It includes key questions for patients to discuss with healthcare providers regarding diagnosis, treatment, and clinical trials.